Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study.

BACKGROUND: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. METHODS: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. RESULTS: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). CONCLUSIONS: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.

Desarrollo de la entrevista ESNA: un instrumento para evaluar el sufri-miento en niños y adolescentes con enfermedades graves y necesidades paliativas / Development of the ESNA interview: An instrument to assess suffering in children and adolescents with serious illnesses and palliative needs

Introducción: Hay una carencia de instrumentos específicos para evaluar el sufrimiento de niños y adolescentes con necesidades paliativas. Objetivo: Describir el proceso de diseño y creación del instrumento para la Evaluación del Sufrimiento en Niños y Adolescentes (ESNA) con necesidades paliativas. Método: 1) Revisión sistemática de la literatura; 2) Establecer marco teórico; 3) Definir los criterios del instrumento; 4) Establecer temáticas relacionadas con el sufrimiento; 5) Validación de contenido por expertos; 6) Validez de facie por pacientes; y 7) Prueba piloto. Resultados: 1) De 750 artículos, se evalúan 161 y se incluyen 51; 2) el marco teórico incorpora el Modelo integrativo del Sufrimiento de Kriokorian, y el Modelo Ecológico de Afrontamiento del Estrés de Brofenbrenner; 3) los criterios priorizan brevedad, lenguaje claro y preguntas relevantes; 4) temáticas relevantes establecidas con 18 adolescentes: vivencia de la enfermedad, gestión de la información, impacto emocional, relación con los otros y el impacto en los otros; 5) 14 profesionales realizan juicio de expertos de la versión preliminar; 6) 8 pacientes realizaron valoración aparente de contenido; y 7) Prueba piloto y análisis cualitativo con 8 pacientes. El instrumento ESNA final es heteroadministrado, con 42 preguntas (26 son exploratorias y 16 ítems cuantitativos). Explora: Experiencia de Enfermedad Gestión de la Información; Esperanza y expectativas; Regulación Emocional; Impacto en los otros; y Aspectos relacionales. Conclusiones: El instrumento ESNA parece ser una herramienta apropiada para la identificación del sufrimiento en niños y adolescentes con necesidades paliativas estando pendiente la evaluación de sus propiedades psicométricas (AU)

Introduction: There is a lack of specific instruments to assess the suffering of children and adolescents with palliative needs. Objective: Describe the process of designing and creating the instrument for the Assessment of Suffering in Children and Adolescents (ESNA) with palliative needs. Method: 1) Literature review; 2) Establish theoretical framework; 3) Define the criteria of the instrument; 4) Establish themes related to suffering; 5) Validation of content by experts; 6) Validity of facie by patients; and 7) Pilot test. Results: 1) Of 750 articles, 161 are evaluated and 51 are included; 2) the theoretical framework incorporates the Kriokorian Integrative Model of Suffering, and the Brofenbrenner Ecological Model of Coping with Stress; 3) the criteria prioritize brevity, clear language and relevant questions; 4) relevant themes established with 18 adolescents: experience of the disease, information management, emotional impact, relationship with others and the impact on others; 5) 14 professionals carry out expert judgment of the preliminary version; 6) 8 patients made an apparent assessment of content; and 7) Pilot test and qualitative analysis with 8 patients. The final ESNA instrument is hetero-administered, with 42 questions (26 are exploratory and 16 quantitative items). Explore: Experience of Illness; Information management; Hope and expectations; Emotional Regulation; Impact on others; and relational aspects. Conclusions: The ESNA instrument seems to be an appropriate tool for the identification of suffering in children and adolescents with palliative needs, pending the evaluation of its psychometric properties (AU)

Use of language in the medical decision-making process for biologic therapy: Youth and parent perspectives.

BACKGROUND: Youth with chronic illnesses and their parents make complex medical decisions and also need to develop medical decision-making skills for transition of care to adult care. The use of inclusive (e.g. 'we decided …') and exclusive (e.g. 'they decided …') language in youth and parents' medical decision-making experiences provides insights into perceptions of engagement. This study assessed youth and parents' perceptions of engagement in medical decision-making about biologic therapy. METHODS: This exploratory mixed-methods secondary analysis of semistructured interview data included youth with juvenile idiopathic arthritis (JIA) and Crohn's disease (CD) and parents. Iterative qualitative coding of interviews generated themes. Exploratory analyses of variance (ANOVAs) and analyses of covariance (ANCOVAs) investigated differences in language use between youth and parents. RESULTS: Parents used more inclusive language in perceptions of medical decision-making experiences than youth, which exploratory analyses found significant (p < 0.05). Youth used more exclusive language than parents in perceptions of medical decision-making. CONCLUSION: This research suggests that youth with chronic illnesses perceived limited engagement in medical decision-making, with parents perceiving higher engagement. This presents challenges for youth as they prepare for the transition to adult care. Future research should assess how inclusive and exclusive language use impacts psychosocial and health outcomes.

Explaining medically unexplained symptoms: somatizing patients' responses in primary care.

OBJECTIVE: To examine (1) how physicians present an explanation of symptoms in terms of a hormonal imbalance as a means to initiate a psychosocial discussion with somatizing patients; and (2) how they respond to this explanation of symptoms. METHODS: Qualitative study of 11 sequences in which physicians explain patients' symptoms in terms of a hormonal imbalance are micro-analyzed using Conversation Analysis. RESULTS: Symptom explanations (SEs) were vague, tentative, and uncertain. Two patterns of SEs (general vs. specific) and five different patterns of patient response were found. Patient responses are classified according to whether they occur during or after the SE, and according to the degree of work patients carry out to verbalize a response. CONCLUSION: Symptom explanations elicited varying degrees of patient agreement, and allowed physicians to obtain patients' permission to conduct a psychosocial exploration. PRACTICE IMPLICATIONS: Physicians may start SEs by associating symptoms to a hormonal imbalance, and by relating them to universally recognizable emotions and familiar situations. Excessive emphasis on long and complex SEs and on seeking extended verbalizations of patient agreement may be counterproductive and antagonize the patient.

Preserving the child as a respondent: initiating patient-centered interviews in a US outpatient tertiary care pediatric pain clinic.

This article identifies some of the challenges of implementing patient-centeredness in multiparty clinical visits. Specifically, it describes four interview practices with which clinicians address these challenges in a US outpatient tertiary care pediatric pain clinic. Using the qualitative method of conversation analysis, we analyze clinicians' child-directed (ages 10-18) interviewing during the initial stage of 51 intake visits. In particular, we analyze the challenges involved in open-ended questioning, a form of interviewing associated with patient-centeredness. Open-ended questioning presents participants with competing demands: although it gives children an opportunity to talk about their illness in their own terms, it also asks them to be responsible for a larger part of the communication work. Moreover, the presence of a parent as an alternative informant can lead to the loss of the child as an informant if clinicians fail to give the child, particularly younger ones, enough guidance in answering. We argue that a flexible range of interviewing practices may be a step towards offsetting children's and parents'past negative experiences with clinicians, improving patient outcomes and implementing child/patient-centeredness.

Progressivity and participation: children's management of parental assistance in paediatric chronic pain encounters.

This article examines how older paediatric patients (10-18 years) initiate different actions, including the solicitation of parental assistance, to accomplish the task of answering clinicians' symptom questions in three paediatric tertiary care clinics. Using the qualitative method of conversation analysis to examine children's symptom accounts in 69 video-recorded outpatient intake visits, I describe four child-initiated strategies that preclude, solicit and limit parental assistance in the interactional environment of having difficulties in providing an answer. These strategies are: children's own answer searches, children's solicitations of corroboration, children's solicitations of an answer, and children's answer completions. Supported by the clinicians' strong commitment to child-centredness, children manage to solicit parental assistance without losing the opportunity to present their own symptom accounts.

Children in chronic pain: promoting pediatric patients' symptom accounts in tertiary care.

This paper examines how clinicians promote pediatric patients' symptom accounts at the beginning of visits in three pediatric tertiary care clinics at a university hospital in the United States: pain, gastroenterology and neurology. Quantitative and qualitative data were collected for 69 patient-parent pairs, including videotaped intake visits. Two forms of child account promotion, together with their corresponding distribution across clinics, were identified: (1) Epistemic prefaces were used to upgrade the patient's epistemic status and to establish the child as primary informant; and, (2) non-focused questioning was used to permit children latitude in the formulation of symptoms and experiences. In general, epistemic prefaces were characteristic of the gastroenterology and neurology visits, while non-focused questioning was found overwhelmingly in the pain encounters.

Clinicians' routine use of non-disclosure: prioritizing "protection" over the information needs of adolescents with cancer.

This is a qualitative study of clinicians' use of partial information disclosure and its consequences for adolescents' ability to participate in the management of their cancer treatment. A total of 17 pediatric cancer patients, their families, and clinicians were observed during 15 months of ethnographic fieldwork in a hospital in Barcelona, Spain. Eighty-six hours of videotaped medical and social activities were analyzed micro-interactionally and longitudinally. Clinicians used 4 strategies to evade direct answers to adolescents' questions: contingent answers, narrow answers, non-answer responses, and question forestalling. Information withholding by clinicians was shown to greatly limit adolescents' ability to participate in the management of their treatment and to be ineffective in its implicit goals of protecting the patient and containing uncertainty and anxiety. The author concludes that if clinicians were to integrate adolescents' individual information needs into their communicative practices they would be able to better assess what information to disclose as well as how and when to disclose it.