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- Monitoring Patient-Reported Outcomes in Self-management of Postsurgical Symptoms in OncologyPublication . Almeida, Ana M.; Martins, Teresa; Lima, LigiaBackground Surgery is used widely for cancer treatment, and in most types, after discharge, patients usually report multiple symptoms, which, if not controlled, can put postoperative recovery at risk. Understanding which patient-reported outcomes (PROs) should be monitored could have a significant impact on reducing the symptom burden associated with cancer and its treatment by playing a pivotal role in developing symptom self-management plans and designing tailored approaches to optimize patients’ symptom self-management behaviors. Objective To map the PROs used for patients’ postsurgical symptom self-management after hospital discharge following cancer surgery. Interventions/Methods Our scoping review process was guided by the steps for conducting scoping reviews recommended by the Joanna Briggs Institute. Results The search identified 97 potentially relevant studies, with 27 articles meeting the inclusion criteria. The most frequently assessed and monitored PROs were problems with surgical wounds, more general physical symptoms, psychological functioning outcomes, and quality of life. Conclusions Our results showed an overall uniformity among the PROs selected to be monitored in surgical cancer patients after hospital discharge. Monitoring through electronic platforms is widely used and seems useful to self-manage symptoms and optimize the recovery of cancer patients after discharge following surgery. Implications for Practice This study provides knowledge about PROs that can be applied in oncologic patients after surgery to self-report their symptoms following discharge.
- Maternal coping strategies in response to a child’s chronic and oncological disease: a cross-cultural study in Italy and PortugalPublication . Perricone, Giovanna; Prista Guerra, Marina; Cruz, Orlanda; Polizzi, Concetta; Lima, Ligia; Morales, Maria Regina; Serra de Lemos, Marina; Fontana, ValentinaA child's oncological or chronic disease is a stressful situation for parents. This stress may make it difficult for appropriate management strategies aimed at promoting the child's wellbeing and helping him or her cope with a disease to be adopted. In particular, this study focuses on the possible connections between the variable national cultural influences and the parental strategies used to cope with a child's severe disease by comparing the experiences of Italian and Portuguese mothers. The study investigates differences and cross-cultural elements among the coping strategies used by Italian and Portuguese mothers of children with oncological or chronic disease. Two groups of mothers took part: 59 Italian mothers (average age 37.7 years; SD=4.5) and 36 Portuguese mothers (average age 39.3 years; SD=4.6). The tool used was the Italian and the Portuguese versions of the COPE inventory that measures five coping strategies: Social Support, Avoidance Coping, Positive Aptitude, Religious Faith and Humor, Active Coping. There were statistically significant differences between Portuguese and Italian mothers regarding Social Support (F(3, 94)=6.32, P=0.014, ɳ(2)=0.065), Religious Faith and Humor (F(3, 94)=20.06, P=0.001, ɳ(2)=0.18, higher values for Portuguese mothers) and Avoidance Coping (F(3, 94)=3.30, P=0.06, ɳ(2)=0.035, higher values for Italian mothers). Regarding child's disease, the only statistically significant difference was in Religious Faith and Humor (F(3, 94)=7.49, P=0.007, ɳ(2)=0.076, higher values for mothers of children with chronic disease). The findings of specific cultural transversalities provide the basis for reflection on important factors emerging on the relationship between physicians and parents. In fact, mothers' coping abilities may allow health workers involved in a child's care not only to understand how parents face a distressful event, but also to provide them with professional support.
- The added value of narratives in the understanding of adolescent’sPublication . Lima, Ligia; Silva, Vanessa; Lemos, MarinaEvidence shows that living with diabetes during adolescence is a challenging experience. Besides the disease and treatment implications, it is important to comprehend how young people make sense of and manage their illness. Illness perceptions have been associated with a range of physical and mental health outcomes in adolescents with chronic disease. In order to contribute to a better understanding of the adolescent’s experiences with diabetes, this study aimed at1 describing illness perceptions of young people with diabetes2; understanding whether and in what ways, an in-depth analysis of the adolescent’s narratives, o%ers additional insight into their experience of living with diabetes. Participants were 32 adolescents with diabetes, aged 12 to 18 years, who completed the Brief Illness Perception Questionnaire and wrote a text about “What it is like to have diabetes”. Narratives were analysed with thematic analysis and illustrate how adolescents experience their disease, and the strategies adopted by them to maintain a sense of normalcy. Signi*cant associations with the scores for illness perceptions were found, as for example, adolescents who reported a better understanding of their illness, evaluated the experience of having diabetes as less restrictive (r = -0,445; p = 0.011). The use of narratives proved very informative on the adolescent’s experiences with diabetes. For clinical interventions aimed to promote the adaptation of young people with diabetes, this study *ndings address the need to focus on normalizing their lives, and to promote more positive illness beliefs and coping strategies, to balance the restrictive impact that diabetes has on adolescent’s lives.
- Psychometric Properties of the Portuguese Version of the Iceland-Family Perceived Support Questionnaire in Parents of Children and Adolescents with Chronic ConditionPublication . Lemos, Sara; Andrade, Luísa; Barbieri-Figueiredo, MC; Martins, Teresa; Lima, LigiaAbstract: The support from nurses perceived by family members of children with chronic conditions has been shown to be a protective factor at different levels in a family’s health. As such, nurses need to have instruments that assess this perception to increase the quality of the care provided to those families. This methodological study aimed to analyze the psychometric properties of the Portuguese translation of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) in parents of children/adolescents with chronic conditions. The ICE-FPSQ was administered to 237 parents recruited from the day hospital and outpatient services of four hospitals in Northern Portugal. Cronbach’s alpha reliability coefficients for the Total Scale, Cognitive Support, and Emotional Support subscales were excellent (α = 0.96, α = 0.93, α = 0.96, respectively). Reasonable fit indexes were found by confirmatory factor analysis (χ 2/df = 2.799; CFI = 0.960; PCFI = 0.791, and RMSEA = 0.087), indicating a good model fit to the original structure. The ICE-FPSQ is a valid and reliable instrument to measure perceived support.
- Psychometric properties of the European Portuguese version of the Pediatric Quality of Life Inventory™ family impact modulePublication . Lima, Ligia; Lemos, Sara; Barbieri-Figueiredo, M. C.; Martins, Teresa; Andrade, LuísaPurpose This study aims to assess the psychometric properties of the European Portuguese version of the Pediatric Quality of Life Inventory™ Family Impact Module in parents of children/adolescents with chronic health conditions. Design and Methods The European Portuguese version of the Pediatric Quality of Life Inventory™ Family Impact Module was administered to 237 parents of children/adolescents with chronic disease and/or chronic disorder. Participants were recruited from the day hospital and/or outpatient services of four hospitals in Northern Portugal, the majority being mothers (87.3%) aged between 31 and 50 years (86.9%). The questionnaire was administered online through the REDCap platform. The hierarchical factor model of the Pediatric Quality of Life Inventory™ Family Impact Module proposed by Varni and colleagues was tested. Results Confirmatory Factor Analysis indicated good model fit, with the following indices (χ2/gL = 2.19; comparative fit index [CFI] = 0.90; root mean square error of approximation [RMSEA] = 0.07 immune cell [IC] 90% = 0.06−0.07). Internal consistency values were high (parent quality of life subtotal, α = .96; family functioning subtotal, α = .92; total score, α = .96). Practice Implications The European Portuguese version of the PedsQL™ FIM is a reliable and valid measurement tool for nurses to assess the impact of the child/adolescent chronic conditions on family's quality of life and to develop interventions to improve their well-being.
- Ajustamento emocional em doentes com sarcoma e a perceção de suporte autónomo dado pelos enfermeirosPublication . Bastos, Celeste; Santos, Célia; Freitas, Jorge; Magalhães, Emília; Lima, LigiaOs sarcomas são tumores malignos raros, com consequências negativas para a funcionalidade e autoimagem, e que se associam a um maior risco de perturbação emocional, revelando-se fundamental estudar o papel dos enfermeiros no suporte fornecido a estes doentes. O objetivo do estudo foi analisar a relação entre o ajustamento emocional e a perceção sobre o ambiente terapêutico, em três momentos do processo de tratamento. Realizou-se um estudo longitudinal, numa amostra de 24 pessoas com sarcoma (ósseo ou dos tecidos moles), com uma média de 41 anos de idade e de 10 anos de escolaridade. Os instrumentos utilizados foram: questionário de caracterização sociodemográ!ca e clínica, a versão portuguesa da Escala de Ansiedade e Depressão Hospitalar (EADH) e o Questionário de Perceção do Cliente sobre o Ambiente Terapêutico (QPCAT). Globalmente foram identi!cados níveis baixos de ansiedade e de depressão ao longo do tratamento. Os doentes demonstraram uma perceção favorável sobre o suporte proporcionado pelos enfermeiros, com repercussões positivas no seu ajustamento emocional, em especial nas fases mais avançadas do tratamento. Os resultados sugerem que os enfermeiros apoiam e encorajam os doentes na gestão do seu tratamento, sendo este suporte promotor de um bom ajustamento psicossocial. São ainda evidenciados alguns indicadores de maior vulnerabilidade que requerem um suporte terapêutico ajustado às suas necessidades ao longo do percurso da doença e do tratamento.
- Psychometric Properties of the Portuguese Version of the Iceland-Family Perceived Support Questionnaire in Parents of Children and Adolescents with Chronic ConditionPublication . Lemos, Sara; Andrade, Luísa; Barbieri-Figueiredo, M. C.; Martins, Teresa; Lima, LigiaThe support from nurses perceived by family members of children with chronic conditions has been shown to be a protective factor at different levels in a family’s health. As such, nurses need to have instruments that assess this perception to increase the quality of the care provided to those families. This methodological study aimed to analyze the psychometric properties of the Portuguese translation of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) in parents of children/adolescents with chronic conditions. The ICE-FPSQ was administered to 237 parents recruited from the day hospital and outpatient services of four hospitals in Northern Portugal. Cronbach’s alpha reliability coefficients for the Total Scale, Cognitive Support, and Emotional Support subscales were excellent (α = 0.96, α = 0.93, α = 0.96, respectively). Reasonable fit indexes were found by confirmatory factor analysis (χ2/df = 2.799; CFI = 0.960; PCFI = 0.791, and RMSEA = 0.087), indicating a good model fit to the original structure. The ICE-FPSQ is a valid and reliable instrument to measure perceived support.
- Illness perceptions of adolescents with in'ammatory bowel disease and the association with distress and well-beingPublication . Silva, Vanessa; Lima, Ligia; Lemos, MarinaIn'ammatory Bowel Disease is one of the most common chronic diseases a*ecting children and adolescents. It requires a lifelong medical treatment, as well as the adoption of a healthy lifestyle. However, little is known about illness perceptions of adolescents su*ering from IBD and how they relate to well-being measures. Aims were 1) to describe illness perceptions, distress and well-being of adolescents with IBD; and 2) to associate illness perceptions with distress and well-being of adolescents with IBD. Thirty-six adolescents aged 12 to 18, diagnosed with IBD, answered the Brief Illness Perception Questionnaire and distress and well-being items from the Health Behaviour in School-aged Children questionnaire. Overall the disease is perceived as benign. The majority of adolescents show some concerns about the disease but they feel a reasonable self-control over their illness and strongly believe in the bene+ts of treatment. Globally, adolescents showed positive perceptions of their health status and of their life. However, tiredness, exhaustion and nervousness were referred as frequent symptoms. Signi+cant correlations showed that higher threatening perception of illness was associated with an increased frequency of physical symptoms, of tiredness and exhaustion, of depression and nervousness and with less satisfaction with life (rs ranging from .331 to .587). All descriptive and correlational results were signi+cantly stronger in adolescents with active disease compared to those in remission. Negative illness perceptions will likely trigger distress and malaise in adolescents with IBD. From the evaluation/comprehension of illness perceptions, it is possible to plan interventions to change negative perceptions and illness outcomes.