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- Measuring spiritual well‑being in Brazilian adolescents with chronic illness using the FACIT‑Sp‑12: age adaptation of the self‑report version, development of the parental‑report version, and validationPublication . Alvarenga, Willyane Andrade de; Nascimento, Lucila Castanheira; Santos, Claudia Benedita dos; Leite, Ana Carolina Andrade Biaggi; Mühlan, Holger; Schmidt, Silke; Bullinger, Monika; Carvalho, Emília Campos de; Bredle, Jason; Arnold, Benjamin; Coelho, Robson de Castro; Vieira, MargaridaSpiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated version, using an expert panel, back-translation, and cognitive interviews with 72 participants. The psychometric properties of both versions were verified with two- and three-factor models by testing with 212 participants. The self- and parental-reported versions showed face validity, content validity, and acceptable levels of internal consistency for the overall scale and the two-factor model. The convergent validity was satisfactory for most items in both two- and three-factor models, but there was a lack of discrimination in the three-factor model using multitrait–multimethod analysis. This study presents the first instrument to assess the spiritual well-being of adolescents from their point of view and to allow their parents to serve as evaluators. However, we recommend further psychometric testing of the self- and parental-report scales to assess spiritual well-being in adolescents with chronic diseases in Brazil.
- Spiritual care: the nurses’ experiences in the pediatric intensive care unitPublication . Nascimento, Lucila C.; Alvarenga, Wylliane A.; Caldeira, Sílvia; Mica, Tâmisa M.; Oliveira, Fabiane C. S.; Pan, Raquel; Santos, Tabatha F. M.; Carvalho, Emília C.; Vieira, MargaridaPhysical aspects of disease management are often more evident than those related to spirituality or spiritual care. Spirituality may appear more crucial in pediatric intensive care units (PICUs) when patients are experiencing serious illness or end-of-life situations. This paper describes the meaning of spirituality according to nurses who had worked in PICUs and how they provide spiritual care to children and their families. It is an exploratory research using a qualitative approach, including interviews with eleven PICU nurses. Data were analyzed using thematic analysis; two themes were identified: meanings of spirituality and religiosity according to nurses, and the provision of spiritual care to children in the PICU and their families. The interviewed nurses recognized the importance and value of spiritual care and are aware that spiritual needs are considered to be of significantly less importance than physical treatments. Spiritual care was mainly focused on the children’s families; the nurses justified the absence of spiritual care to children, based on lack of time and children’s age and level of consciousness. These results highlight a deficiency in spiritual care in PICUs and demonstrate the need for improved knowledge and demonstrate the need to not only raise awareness of the spiritual dimension of children, adolescents, and their families, but also to enhance discussion and improve general knowledge on the importance of spirituality in the treatment regimen to provide effective holistic care.
- Spiritual needs of Brazilian children and adolescents with chronic illnesses: a thematic analysisPublication . Alvarenga, Willyane de Andrade; Machado, Júlia Rezende; Leite, Ana Carolina Andrade Biaggi; Caldeira, Sílvia; Vieira, Margarida; Rocha, Silvana Santiago da; Nascimento, Lucila CastanheiraPurpose: To identify the spiritual needs of children and adolescents with chronic illnesses and how these needs are met by health professionals during hospitalization. Design and methods: A qualitative descriptive study was developed with 35 children and adolescents, between 7 and 18 years old, diagnosed with cancer, cystic fibrosis, and type 1 diabetes. Interviews with photo-elicitation were conducted during the hospitalization at a Brazilian public pediatric hospital. Findings were treated using thematic analysis, and the Consolidated Criteria for Reporting Qualitative Research (COREQ) was followed for quality reporting. This research was approved by a research committee. Results: Two themes emerged. The first, entitled ‘Spiritual needs’, encompasses five types of needs: (1) need to integrate meaning and purpose in life; (2) need to sustain hope; (3) need for expression of faith and to follow religious practices; (4) need for comfort at the end of life; and (5) need to connect with family and friends. The second theme was the ‘Definition of spiritual care’. Conclusions: Children and adolescents with chronic illnesses have spiritual needs while in hospital. Meeting these needs is essential for finding meaning, purpose and hope in the experience of living with chronic illnesses and at the end of life, based on their faith, beliefs and interpersonal relationships. But, these needs have not been fully addressed during hospitalization. Practice implications: These results emphasize the need to implement spiritual care when caring for hospitalized pediatric patients, which includes addressing spiritual needs.
- The possibilities and challenges in providing pediatric spiritual carePublication . Alvarenga, Willyane de Andrade; Carvalho, Emilia Campos de; Caldeira, Sílvia; Vieira, Margarida; Nascimento, Lucila CastanheiraThe purpose of this article was to present discussions on how pediatric nurses can perform spiritual care to children and adolescents and discuss the challenges of integrating such care in health-care settings. Based on the literature, the article presents an overview of spiritual care in pediatric settings highlighting the assessment of spirituality, expected outcomes, and the corresponding nursing interventions. Spiritual care provided to children and adolescents should take into account all aspects of the developmental stage, life experiences, and familiar and sociocultural contexts. Different approaches can be used to perform spiritual care. However, lack of knowledge and time are highlighted as the main challenges in integrating spiritual care into the clinical practice. Spiritual care is crucial to the well-being of children and adolescents in times of illness and hospitalization when the goal is to provide holistic care.