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1.
Headache ; 64(3): 306-316, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38440947

RESUMO

OBJECTIVE: We aimed to examine factors associated with frequent headache remission in schoolchildren aged 10-18 years. BACKGROUND: Frequent headache is a common health problem in adolescence, and some individuals in this population experience remission. Factors preceding headache remission as opposed to ongoing headache, and their development over time, have not been examined extensively. METHODS: Data were derived from a large school sample (N = 2280). Over the course of 1 year, n = 156 adolescents experienced remission from frequent headaches, while n = 125 adolescents continued to have frequent headaches throughout the year. In this longitudinal case-control study, we predicted headache remission using demographic, pain, psychosocial, sleep, and physiological characteristics. Additionally, we sought to explore the development of psychosocial, sleep, and physiological characteristics in relation to remitted versus ongoing headache over the 1-year period. RESULTS: A model containing the variables sex (odds ratio [OR] = 0.43, 95% confidence interval [CI] = 0.248-0.76, p = 0.003), headache intensity (OR = 0.85, 95% CI = 0.73-0.99, p = 0.035), anxiety score (OR = 0.92, 95% CI = 0.85-1.01, p = 0.071), and depression score (OR = 0.94, 95% CI = 0.89-1.00, p = 0.041) predicted the outcome variable (remitted vs. non-remitted headache), explaining 17% of the variance in group membership. Schoolchildren reporting remitted headache at the end of the year exhibited lower depression (F[1, 557.01] = 45.77, p < 0.001) and anxiety scores (F[1, 557.01] = 21.72, p < 0.001), higher school satisfaction (F[1, 209.46] = 7.15, p = 0.008), and fewer difficulties falling asleep (F[1, 856.52] = 41.21, p < 0.001) or sleeping through the night (F[1, 731.12] = 26.42, p < 0.001) throughout the year compared to those with non-remitted headache. Depression scores declined significantly over the year in the group with remitted headache, whereas these scores remained constant in the group with non-remitted headache. CONCLUSION: Our results suggest a correlation between headache remission and male sex, improved mental health, and reduced pain-related burden. Moreover, there was an observed decline in symptoms of depression during headache remission. Psychotherapy may be a promising treatment strategy for addressing frequent headaches reported by children and adolescents.


Assuntos
Depressão , Cefaleia , Adolescente , Humanos , Masculino , Criança , Estudos de Casos e Controles , Depressão/epidemiologia , Depressão/complicações , Cefaleia/epidemiologia , Cefaleia/terapia , Cefaleia/diagnóstico , Dor/epidemiologia , Estudos Longitudinais
2.
BMC Palliat Care ; 23(1): 52, 2024 Feb 23.
Artigo em Inglês | MEDLINE | ID: mdl-38395866

RESUMO

BACKGROUND: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. METHODS: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. RESULTS: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). CONCLUSION: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.


Assuntos
Actigrafia , Cuidadores , Humanos , Adolescente , Criança , Actigrafia/métodos , Estudos Prospectivos , Julgamento , Sono , Pais , Inquéritos e Questionários
3.
Schmerz ; 38(2): 99-106, 2024 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-37642788

RESUMO

BACKGROUND: Severely disabling chronic pain affects approximately half a million children in Germany. If there is a lack of response to unimodal treatment, an inpatient interdisciplinary multimodal pain treatment (IMPT) can be considered. OBJECTIVE: This review article describes the supply situation of pediatric inpatient IMPT in Germany and presents the current evidence on the effectiveness. MATERIAL AND METHODS: Based on a systematic literature search, studies addressing the effectiveness of pediatric inpatient IMPT in Germany were identified. In addition, further sources were used to extract information on pediatric IMPT treatment centers in Germany in order to describe the treatment approaches, the qualification of personnel and characteristics of patients. RESULTS: There are four pediatric pain centers in Germany that are specialized in inpatient IMPT for children and adolescents. Treatment duration ranges between 3 and 4 weeks. The multimodal treatment is carried out by a multiprofessional team and is generally available for patients up to 18 years. The majority of patients are female. The effectiveness of pediatric IMPT in Germany was investigated up to 4 years after treatment. Positive effects were shown for pain characteristics and also for the emotional burden. Additional treatment modules can facilitate further optimization of treatment effects. CONCLUSION: Further research on the effectiveness of IMPT in Germany is important in order to refine and optimize the available treatment programs.


Assuntos
Dor Crônica , Pacientes Internados , Adolescente , Humanos , Masculino , Feminino , Criança , Manejo da Dor , Dor Crônica/terapia , Terapia Combinada , Alemanha
4.
J Sleep Res ; 32(4): e13881, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36929532

RESUMO

Children and adolescents with complex chronic conditions, including those with life-threatening or life-limiting conditions, are a heterogeneous population. Many individuals exhibit sleep abnormalities that are measurable by proxy questionnaires. No suitable instrument to assess the wide range of different complex chronic conditions is currently available. The aim of the present study was to develop a screening tool-the Sleep Screening for Children and Adolescents with Complex Chronic Conditions-to effectively obtain sleep behaviour information in this population. Following a mixed-method design, potential items for the Sleep Screening for Children and Adolescents with Complex Chronic Conditions questionnaire were defined through literature research and expert meetings. In a pre-test with N = 60 family and professional caregivers, the items' relevance and comprehensibility as well as the instrument's overall design were assessed. For the main test, N = 315 participants were recruited in three tertiary paediatric hospitals. A principal components analysis detected the questionnaire's scales. Item analysis focused on mean values, range, difficulty and discriminatory power. Convergent validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions was assessed via correlations between scale items. Most patients had neurological or neuromuscular diseases. Four scales ("Falling and staying asleep", "Sleep-associated respiration and arousal", "Daytime sleepiness" and "Sleep-associated movements") emerged. The item analysis showed satisfactory discriminative power. In the preliminary validation, all scales correlated positively with a child's care level and with various sleep circumstances items. Three scales additionally correlated with the number of complex chronic condition diagnoses. This newly developed questionnaire can provide clinicians with first indications of possible sleep problems in a growing paediatric population.


Assuntos
Transtornos do Sono-Vigília , Sono , Criança , Humanos , Adolescente , Doença Crônica , Inquéritos e Questionários , Nível de Alerta , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/epidemiologia
5.
J Pediatr Psychol ; 48(7): 626-635, 2023 07 20.
Artigo em Inglês | MEDLINE | ID: mdl-37164626

RESUMO

OBJECTIVE: There are limited data on the prevalence and stability of fatigue in pediatrics, particularly among youth with chronic pain. Little is known about longitudinal effects of fatigue on health outcomes such as sleep quality, psychological distress, Health-Related Quality of Life, and chronic pain. METHODS: A community-based sample of N = 1276 students (9-17 years; 52% female; 30.3% with chronic pain) from 3 schools was screened at 2 measurement points 3 months apart. Prevalence and stability of fatigue were examined. Longitudinal analyses regarding fatigue and health outcomes were run using repeated measures correlations. The impact of change in fatigue on pain progression was analyzed using multilevel linear models. RESULTS: In the total community sample, 4.4% reported severe fatigue symptoms. The prevalence of severe fatigue was significantly higher in students with chronic pain (11.4%) compared to those without (1.3%). Fatigue symptoms persisted for several months, worsening of symptoms was more common and improvement less common in children with chronic pain. Sleep, psychological distress, and Health-Related Quality of Life were significantly associated with fatigue across both measurement points (rs = |0.16-0.44|), with no significant differences in the strength of correlations between children with and without chronic pain (ps > .05). There was a significant interaction between change in fatigue and courses of pain intensity and functional impairment. CONCLUSIONS: Fatigue is highly prevalent, particularly in youth with chronic pain. The negative association of fatigue with health outcomes, and its impact on the course of pain, require early identification and treatment of those affected to prevent negative long-term consequences.


Assuntos
Dor Crônica , Transtornos do Sono-Vigília , Adolescente , Humanos , Feminino , Criança , Masculino , Dor Crônica/epidemiologia , Qualidade de Vida , Depressão/terapia , Estudos Longitudinais , Transtornos do Sono-Vigília/epidemiologia , Transtornos do Sono-Vigília/psicologia , Fadiga/epidemiologia
6.
Schmerz ; 37(1): 19-28, 2023 Feb.
Artigo em Alemão | MEDLINE | ID: mdl-35080660

RESUMO

BACKGROUND: Young adults find themselves in an unstable phase of life with relationship breaks, falling structures and great challenges in life. Chronic pain makes it difficult to cope with this stage of life due to functional, emotional and social limitations. For this age group there are hardly any target group-specific treatment programs. OBJECTIVE: The aim of the study was to find out what needs the patient group of young adults with chronic pain have with regard to inpatient pain therapy and what need is indicated for a separate therapy concept for this age group. MATERIAL AND METHODS: Within the framework of a qualitative research approach, specific needs of young adults with regard to inpatient pain therapy were surveyed via guideline-based interviews. A total of 66 interviews were conducted with patients and practitioners. The evaluation was carried out using the method of structuring qualitative content analysis. RESULTS: Five main categories regarding the specific treatment needs of young adult pain patients were identified: respect, belonging, special circumstances, locating the pain and specific elements of therapy. CONCLUSION: Special living conditions and a respectful treatment attitude are of particular importance. A greater number of activation offers, a higher proportion of life counseling and perspective-creating aspects as well as psychotherapeutic offers are a necessity for an efficient therapy. Acceptance and commitment therapy techniques and the positive benefits of peer groups can expand the treatment approach for young adults. Young adults could benefit from a target group-specific and needs-adapted care structure.


Assuntos
Terapia de Aceitação e Compromisso , Dor Crônica , Humanos , Adulto Jovem , Dor Crônica/terapia , Pesquisa Qualitativa , Manejo da Dor
7.
J Pediatr Psychol ; 47(2): 121-131, 2022 02 14.
Artigo em Inglês | MEDLINE | ID: mdl-34414435

RESUMO

OBJECTIVE: The combination of parental chronic pain and internalizing characteristics are relevant to chronic pain experiences in their children. A promising unified multifactorial intergenerational model of chronic pain was published in 2019; however, this model was only generalizable to children with severe chronic pain and some factors had limitations. This study aimed to determine validity of an adapted multifactorial model, including parent and child chronic pain status, pain characteristics, pain-related functioning, and internalizing symptoms, in a community setting. Subgroup analyses based on presence of chronic pain in parents and children were explored to determine whether effects were stronger in certain subsamples. METHODS: Adolescents (N = 1,450, Mage=12.7 years, 50% female), and their parents (82% mothers), were recruited from five schools to complete online surveys. Structural equation modeling was used to investigate interrelated pain-related experiences between parents and their offspring. RESULTS: The adapted unified multifactorial model had good model fit in the community sample. Significant weak associations were found between all parent and child factors. The strongest associations were found in the subsample of parents and children with chronic pain. In all subgroups, internalizing factors were the most strongly linked intergenerational constructs. CONCLUSIONS: Our results support the validity of the unified multifactorial model of parental factors in pediatric chronic pain, although associations were weaker in the community sample than those previously reported in a clinical sample. In children who develop chronic pain, it is important to consider their parent's chronic pain and internalizing symptoms to best manage intergenerational effects.


Assuntos
Dor Crônica , Adolescente , Criança , Feminino , Humanos , Masculino , Mães , Medição da Dor , Relações Pais-Filho , Pais
8.
Qual Life Res ; 31(4): 1257-1266, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34773573

RESUMO

PURPOSE: Fatigue is a common symptom in children and adolescents. Its negative impact on health outcomes is even more pronounced in those with chronic pain. There is currently no fatigue measurement tool in German that is validated for both children and adolescents with and without chronic pain. Therefore, this study aimed to gather quantitative validity evidence to support the use of the German version of the PROMIS® Pediatric Short Form v2.0 - Fatigue 10a (PROMIS® F-SF) in the German pediatric general population as well as in German pediatric chronic pain patients. METHODS: The 10-item self-assessment questionnaire was validated in a sample of N = 1348 school children (9-18 years; 52.4% female) and N = 114 pediatric chronic pain patients (8-17 years; 63.3% female). Construct and convergent validity, reliability, and item and scale characteristics were examined. RESULTS: Confirmatory factor analyses showed sufficient model fit for the 1-factor model of the questionnaire (school sample: CFI = 0.94, RMSEA = 0.10, SRMR = 0.04; patient sample: CFI = 0.90, RMSEA = 0.14, SRMR = 0.05). Convergent validity was supported by weak-to-large significant correlations with sleep quality, health-related quality of life (HRQoL), and pain characteristics. The questionnaire had excellent internal consistency in both samples (α = 0.92 and α = 0.93). Sex differences and age distributions of the PROMIS® F-SF showed that girls reported significantly higher fatigue than boys and that fatigue increased with age. CONCLUSION: The PROMIS® F-SF is a reliable instrument with good psychometric properties. Preliminary evidence is provided that the questionnaire validly measures fatigue in children and adolescents with and without chronic pain.


Assuntos
Dor Crônica , Qualidade de Vida , Adolescente , Criança , Fadiga , Feminino , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários
9.
J Paediatr Child Health ; 58(8): 1352-1358, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35426461

RESUMO

AIM: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single-room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients. This study aimed to determine the prevalence of MDRO, the predictive value of risk factors and the incidence of nosocomial infections and nosocomial colonisations on a PPC inpatient unit applying a special hygiene concept that enables participation in social activities through risk-adaption and barrier nursing. METHODS: Two-year surveillance with MDRO screening of all intakes (N = 386) of a PPC unit on the day of admission and discharge. To determine the predictive value of pre-defined risk factors, logistic regression analyses were calculated. Receiver operating characteristic analyses were performed to determine the predictive power of the number of risk factors on the presence of MDRO. RESULTS: The rate of MDRO colonisation at admission was 12.7%; previous positive MDRO screening was the only significant individual risk factor. Over the 2-year period, no MDRO-related nosocomial infections occurred; nosocomial colonisation incidence density was 0.6. CONCLUSION: Results demonstrate that patients with at least one risk factor have to be cared for by barrier nursing until MDRO screening results are negative. Following these guidelines prevents nosocomial MDRO transmission.


Assuntos
Infecção Hospitalar , Farmacorresistência Bacteriana Múltipla , Criança , Infecção Hospitalar/diagnóstico , Infecção Hospitalar/epidemiologia , Infecção Hospitalar/prevenção & controle , Humanos , Higiene , Cuidados Paliativos , Prevalência , Fatores de Risco
10.
BMC Palliat Care ; 21(1): 185, 2022 Oct 17.
Artigo em Inglês | MEDLINE | ID: mdl-36244981

RESUMO

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos , Pediatria , Criança , Europa (Continente) , Pesquisas sobre Atenção à Saúde , Serviços de Assistência Domiciliar/estatística & dados numéricos , Humanos , Cuidados Paliativos/estatística & dados numéricos , Pediatria/estatística & dados numéricos
11.
Schmerz ; 36(2): 89-98, 2022 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-34170398

RESUMO

BACKGROUND AND OBJECTIVES: Recurrent pain in childhood and adolescence is a common health problem. Pediatricians are usually the patients' first contact person. The current study investigated patients' and parents' expectations when consulting a pediatrician and their rating of the treatment. MATERIALS AND METHODS: In 36 pediatric practices, 224 patients with recurrent pain and 273 parents participated in this cross-sectional tablet survey. The collected data included the motivation for arranging a physician consultation, pain concept, treatment expectations, and assessment of treatment. Additionally, the patients' age was investigated as an influencing factor. RESULTS: The patients' and parents' predominant motivation for arranging a consultation was the clarification of the cause of pain. Older patients were additionally motivated by frequent but ineffective drug use. Predominantly in older patients, a biopsychosocial pain explanation was identified. Approximately half of all patients and parents indicated biological and psychological influencing factors. The most frequent expectation of the consultation was obtaining information on pain management. Overall, consultations were rated very positively, especially when patients and parents felt understood and taken seriously. CONCLUSIONS: Information about the cause of pain and pain management are essential for patients and parents. Besides good communication, sufficient time resources of the practitioner are required.


Assuntos
Dor Crônica , Médicos , Adolescente , Idoso , Criança , Dor Crônica/terapia , Estudos Transversais , Humanos , Pais/psicologia , Atenção Primária à Saúde
12.
Palliat Med ; 35(3): 611-620, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33339481

RESUMO

BACKGROUND: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. AIM: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. DESIGN: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. SETTING: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. RESULTS: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. CONCLUSION: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.


Assuntos
Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos , Criança , Alemanha , Humanos , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
13.
Schmerz ; 35(2): 83-93, 2021 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-33185762

RESUMO

BACKGROUND AND OBJECTIVES: Current research on the treatment of chronic pain in children suggests an increasing trend internationally in the quantity as well as invasiveness of diagnostic and therapeutic interventions. The objective of this research was to examine the interventions received by patients before starting specialized inpatient pain treatment. MATERIALS AND METHODS: A retrospective survey was conducted analyzing patient files from a tertiary children's pain center from 2004, 2008, 2012 and 2016 (N = 585). In addition to diagnostic and therapeutic interventions, pain and patients' characteristics were collected. The identified measures were subsequently evaluated by an interdisciplinary expert panel regarding their invasiveness, potential risk and degree of mental burden. RESULTS: An increase in diagnostic measures and medication was found up to 2012. Thereafter, a decreasing trend was identified (χ2(3) = 11.708; p = 0.008). Invasiveness (χ2(3) = 13.342; p = 0.004), risk (χ2(3) = 13.135; p = 0.004) and mental burden (χ2(3) = 14.403; p = 0.002) showed the same pattern of change. Patients with abdominal and limb pain are particularly at risk for highly invasive and high risk diagnostics. CONCLUSIONS: Evidence for an increase in diagnostic and therapeutic measures in chronic pain was found up to 2012. Patients presenting with certain complaints receive comparably more invasive, risky and burdensome measures.


Assuntos
Dor Crônica , Adolescente , Criança , Dor Crônica/diagnóstico , Dor Crônica/terapia , Humanos , Estudos Retrospectivos , Inquéritos e Questionários
14.
Palliat Med ; 34(3): 349-357, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31659938

RESUMO

BACKGROUND: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. AIM: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI. METHODS: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis. RESULTS: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible. CONCLUSION: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.


Assuntos
Atitude do Pessoal de Saúde , Resistência a Múltiplos Medicamentos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Enfermagem Pediátrica , Criança , Feminino , Humanos , Higiene , Masculino , Pesquisa Qualitativa , Qualidade de Vida
15.
Palliat Med ; 34(3): 309-318, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31680627

RESUMO

BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.


Assuntos
Pessoal de Saúde/psicologia , Doenças do Sistema Nervoso/terapia , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos , Pais/psicologia , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa
16.
Schmerz ; 34(2): 156-165, 2020 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-31907618

RESUMO

BACKGROUND: Epidermolysis bullosa (EB) is a rare genetic disease that soon becomes apparent after a child's birth. Mechanical stress in particular causes painful skin-blistering that potentially leads to numerous complications. Dressing materials fulfill important functions for children with EB: they help protect the skin, but create problems at the same time. OBJECTIVE: The study focuses on the experiences with dressing materials among parents and affected children. The exploration of individual experiences and the presentation of successful strategies to deal with problems is intended to contribute to a better understanding of the advantages and disadvantages of different dressing materials. MATERIALS AND METHOD: Following a qualitative research approach, eight semi-structured interviews were conducted with N = 13 persons. For analysis, a structured qualitative content analysis with an inductive/deductive approach for setting up the final categories was chosen. RESULTS: The use of dressing materials in the context of a dressing change is a key issue for parents and affected children. Five main categories were identified: the child's individuality; problems of use; the adjustment process; parents' expertise; organization of materials. In a continuous process, parents acquire specific knowledge and skills that enable a good fit between the dressing materials and their child and contribute to their own handling confidence. CONCLUSION: With their action-oriented expertise, parents can avoid additional skin damage caused during dressing changes. Here, the focus is on technical skills that lead to more comfort for the affected child and help parents to meet the challenge of dressing changes. Regarding the child's development, parents are continually confronted with new challenges and must adapt their old, or develop new, strategies.


Assuntos
Bandagens , Epidermólise Bolhosa , Pais , Criança , Epidermólise Bolhosa/terapia , Humanos , Pesquisa Qualitativa
17.
Schmerz ; 34(1): 41-51, 2020 Feb.
Artigo em Alemão | MEDLINE | ID: mdl-31549245

RESUMO

BACKGROUND: Emerging adulthood between the ages of 18 and 25 are vulnerable years that offer many opportunities and simultaneously represent huge challenges for autonomy and identity development. Chronic pain in this vulnerable stage of life is associated with long-term negative consequences. So far, knowledge regarding the effectiveness of treatment offers for this patient group is scarce. OBJECTIVE: The aim of this study is to examine the effectiveness of a multimodal inpatient pain therapy for young adults with chronic pain. In addition, the change and influence of the autonomy development will be investigated. MATERIALS AND METHODS: The present longitudinal study examined the effectiveness of a 3-week multimodal inpatient pain treatment in young adults with chronic pain. Three-month follow-up data from 74 patients aged 18-25 years (75.7% female) were included in the study. Standardized questionnaires were used to investigate pain characteristics, pain-associated and emotional impairments quality of life, and various facets of autonomy. RESULTS: The results show that pain-related and emotional impairments are significantly reduced after therapy. Furthermore, there is a significant improvement in the quality of life and resilience. The increased quality of life and reduced pain-related and emotional impairment are associated with a gain of autonomy convictions. DISCUSSION: Multimodal inpatient pain treatment seems to be effective during emerging adulthood. Autonomy convictions seem to be an important starting point for therapeutic success and have a modulating importance in terms of positive changes in emotional impairment and quality of live. Therefore, this aspect should be considered when pain treatment offers are developed for this age group.


Assuntos
Dor Crônica , Terapia Combinada , Manejo da Dor , Qualidade de Vida , Adolescente , Adulto , Dor Crônica/terapia , Feminino , Humanos , Pacientes Internados , Estudos Longitudinais , Masculino , Adulto Jovem
18.
Schmerz ; 34(2): 133-139, 2020 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-32020302

RESUMO

BACKGROUND: Chronic pain is a frequent and disabling health problem in children and adolescents and is associated with high health care utilization and costs. OBJECTIVE: The aim of this study was to analyze the direct and indirect costs of chronic pain in children and adolescents in monetary terms before and after multimodal pain therapy from a societal perspective. MATERIALS AND METHODS: Health care costs 12 months before and after multimodal pain therapy include direct costs from statutory health insurances and parents as well as indirect costs due to working days lost. RESULTS: Direct median costs before multimodal treatment were 5619 € (min-max: 377-35,509 €) per year. In the year after pain therapy, costs decreased to a median of 3262 € (min-max: 142-42,910 €) (p = 0.001). In all, 55% of patients showed a significant cost reduction, while 18% had a cost increase. CONCLUSIONS: An effective multimodal pain therapy may reduce health care costs in children and adolescents. Further economic studies are needed to evaluate long-term effects of pain therapy for children and adolescents with chronic pain in a controlled design.


Assuntos
Dor Crônica , Manejo da Dor , Adolescente , Criança , Dor Crônica/economia , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Humanos , Manejo da Dor/economia
19.
Pflege ; 33(2): 75-84, 2020 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-32048916

RESUMO

Living with bandages: a mixed-methods-study on the view of families of children with epidermolysis bullosa Abstract. Background: Children with epidermolysis bullosa (EB) often need new bandages regularly due to sore skin and blistering. Aim: The question about the experiences of parents and children affected by EB with dressing materials is intended to identify starting points for effective support of families. Methods: In the first part of the sequential mixed-methods study, guideline-based interviews were conducted and evaluated with qualitative content analysis. Based on the results, a questionnaire was developed and implemented as an online survey. After analysis with descriptive statistics, these results were combined with the qualitative results. Results: In the "Find out what works" process, the cutting of the materials and the importance of flexibility come to the fore. The parents' confidence in their actions is particularly evident in the application of the bandages and in their knowledge of the materials. The removal of glued dressings is often associated with pain. Dirty bandages are the most common problem in everyday life. Both aspects relate to the wearability of the bandages. When bandages are integrated into everyday family life, the most important role is played by cost absorption and expertise in the organisation. Conclusions: Parents develop specific competences on EB, on their child and dressings. With counselling and education, nursing takes a central function within the multi-professional accompanying interventions to support and relieve families.


Assuntos
Bandagens , Epidermólise Bolhosa/terapia , Pais/psicologia , Criança , Epidermólise Bolhosa/enfermagem , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pesquisa Qualitativa , Inquéritos e Questionários
20.
Support Care Cancer ; 27(1): 33-42, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30056529

RESUMO

CONTEXT: Opioids administered by various routes are a mainstay of tumour-related pain management. Subcutaneous or intravenous patient-controlled analgesia (PCA) with opioids is an appropriate and safe form of treatment for postoperative pain but studies on this form of administration are sparse in the setting of cancer pain despite widespread use. OBJECTIVE: To evaluate the published studies on opioids administered by subcutaneous and intravenous patient-controlled analgesia for patients with cancer pain. METHODS: Articles were identified from the Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 7, 2016), PubMed (Medline; 1975 to 2016) and EMBASE (1974 to 2016). Additional reports were identified from the reference lists of retrieved papers. Studies based on original data with a focus on intravenous or subcutaneous PCA administration of opioids in patients suffering from cancer-related pain were selected. The language was restricted to Dutch, English or German. Predefined information was extracted depending on the topic. RESULTS: Fifty studies published since 1980 met the inclusion criteria. A wide range of study designs, study quality and research objectives were observed. The studies indicated use of standard or by proxy PCA in the inpatient and outpatient setting were safe and useful while significant adverse effects were rarely observed. CONCLUSION: This systematic review of the current evidence suggests PCA can be appropriately used in a wide range of clinical situations.


Assuntos
Analgesia Controlada pelo Paciente/métodos , Analgésicos Opioides/administração & dosagem , Dor do Câncer/tratamento farmacológico , Administração Intravenosa , Analgesia Controlada pelo Paciente/efeitos adversos , Analgésicos Opioides/efeitos adversos , Humanos , Injeções Subcutâneas , Neoplasias/tratamento farmacológico , Neoplasias/cirurgia , Manejo da Dor/efeitos adversos , Manejo da Dor/métodos , Dor Pós-Operatória/tratamento farmacológico
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