Bereaved parents' perspectives on their child's end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study.

BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. METHODS: One part of the PELICAN study was set up to assess and explore the parental perspectives on their child's EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results. RESULTS: Eighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child's illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place. CONCLUSIONS: A deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals.

The Experiences of Professionals Regarding Involvement of Parents in Neonatal Pain Management.

OBJECTIVE: To explore the experiences of health care professionals related to parent involvement during painful procedures carried out on their infants and to describe contextual facilitators and barriers that influence parent involvement during evidence-based, nonpharmacologic pain relief. DESIGN: Qualitative study with focus group interviews. SETTING: Two Level III NICUs and one Level II NICU in the German-speaking part of Switzerland. PARTICIPANTS: Convenience sample of 17 NICU nurses and six neonatologists. METHODS: Three interprofessional focus group interviews were conducted. Data were analyzed by thematic analysis. RESULTS: Contextual factors among professionals, such as know-how and communication skills regarding neonatal pain management; reflective and collaborative practice; and an attitude of partnership with parents and organizational resources, such as time and staffing, promoted a working atmosphere in which it was possible to talk about neonatal pain with parents. Within this context, parents could be successfully involved in their infant's pain management. In contrast, lack of the aforementioned contextual factors, including an attitude of paternalism toward parents, resulted in a working atmosphere in which professionals "kept silent about pain" and hindered parent involvement during painful procedures. CONCLUSION: The work culture and organizational features of a NICU facilitate or hinder parent involvement in neonatal pain management. Facilitators and barriers should be identified from the individual, team, and system perspectives. Facilitation of parent-centered pain management in infants should be promoted by the organization.

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.

The needs of professionals in the palliative care of children and adolescents.

UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence for Pediatric Palliative Care (PPC) in Switzerland. Within two parts of the study, 76 HCPs were interviewed. The main interview topics were: (1) definition of and attitude toward PPC; (2) current provision of PPC; (3) the support needs of HCPs in the provision of PPC; and (4) the role of specialized PPC teams. HCPs expressed openness to PPC and reported distinctive needs for support in the care of these patients. The main tasks of specialized PPC teams in Switzerland would encompass the coaching of attending teams, coordination of care, symptom control, and direct support of affected families during and beyond the illness of their child. CONCLUSION: This study indicates the need for specialized PPC in Switzerland both inside and outside of centers providing top quality medical care (Spitzenmedizin). Specialized PPC teams could have a significant impact on the care of children and families with PPC needs. Whether hospices are an option in Switzerland remains unanswered; however, a place to meet other families with similar destinies was emphasized.

[The "Zurich Quality Model of Nursing Care", based on the "Quality of Health Outcome Model" (QHOM): a new perspective in measuring quality in nursing care]. / Das auf Basis des <> (QHOM) entwickelte Zürcher Pflege-Qualitätsmodell: Eine neue Perspektive zur Messung der Pflegequalität.

Ensuring and maintaining a high level of quality in nursing care becomes more and more important as economic pressure is increasing and personnel is being reduced. The nursing executives of four large Swiss hospitals therefore commissioned a group of nursing scientists and nursing experts with the task of developing a trendsetting model to represent, assess, and interpret the quality of nursing care. The "Quality of Health Outcome Model" (QHOM) served as a basis for development. More than 60 nurses from acute care hospitals and specialized clinics assessed a first draft of the model in hearings and by means of questionnaires. The model integrated earlier attempts at quality screening regarding structures, processes and results, complementing these three elements with a fourth: the patients, whose characteristics influence the results of nursing care remarkably. Thus, the former one-dimensional, linear viewpoint was resolved into a dynamic representation of all four elements, illustrating a specific concept of nursing care. Through the multi-dimensionality of the model the complexity of the nursing process is better represented. The model's core consists of eight exemplary indicators of quality, each of which is relevant to nursing and for each of which criteria and assessment tools have been formulated. The model is seen as a basis and reference for the quality development and first opportunities for clinical application have been succesfully employed. The project can serve as a paradigm of networking amongst hospitals and cooperation between nursing scientists and experts, and of the critical significance of such collaboration to the advancement of nursing quality.