Lecture 7 - research & pediatric

1)      Benefits, professionalization, advocation

2)      Education, implementation

3)      Better symptom-management

• e.g. QoL, care satisfaction, well being, depressivity/anxiety

• care staff (emotion regulation, coping mechanisms, competency increases, distress decrease, compassion fatigue

  • care has higher level of empathy

  • demanding and exhausting

  • tired, similar to burnout syndrome

• outcome variables: number of days of hospitalization, number of drugs

• cohort longitudinal study with follow up

• from just one nursing home

• cross sectional correlation sudy (no causality, just association between variables, cohort effect, generalizability limited)

• phenomenological research (qualitative; unstructured interview, understand phenomenon which wasnt sufficiently researched alredy)

• experimental study: CG and EG (random distributiion), varification of the effec of the intervention, blinding, causality, expensive, high quality study

• quasi experment: researcher cannot influence the division into groups, patient receive a different intervention, problems: selection, measurement

• cohort study/longitudinal: long term observation of the same group of people, disease development, observing the influences, expensive and timme consuming

-          Vulnerability of patients

-          A personal moral dilemma

-          Role conflict

-          Unavailability

-          Protective tendencies of staff and family

-          The principle of justice

è All research must be approved by an ethics committee

-          Our data showed that 49-53% of patients do not mind participation, for 41-48% it is even interesting or very interesting

1) an opportunity to help others

2) contribute to society

research help

help yourself

• QoL

• Assessing needs

• assessing functioning

• complicated grief

• indidcation for PC (surprise question for physicians)

• patient dignity inventory

• inform about ongoing research

• explain the general benefits as well as the specific benefits of this research

• engage manangement

• anable participation in an professional event

• present research participation publicly

• identify all possible ethical and methodological issues that researchers face

• provide set of recommendations

method: systematic review, 17 includes studies

1) flexible recruitment (in person, flyer, different ressources, be personal)

2) context (cultural differences, also: youll work with vulnerable participants, built a study for those circumstances)

3) informed consent, optimal time (update consent if circumstances change, stable enough and find convenient “un busy” time in the day

4) sensibility (of the topic, prepare for emotions, prepare itll take longer with people that age and those topics)

5) boundaries (emotional borders, understand the role o researcher)

6)analysis : loss of data (missing data, drop outs think about when designing it)

• Be flexible

• Take time to explain study to staff and participants

• Recognize participants´ contribution

• Engage all stakeholdersin your research (already in phase of designing)

• Be aware of emotions and boundaries

• Findings might be empirically verified

• Challenges should be reflected in the training of researchers

• Researchersshould prepare for these challenges before starting the projects

-          Children development (interdisciplinary approach, share your knowledge)

-          Conceptualization of death (according to death, adapt language and how you explain death etc)

-          Different diseases (oncological and neuromuscular, genetical disease)

-          The impact of family system (more support needed for siblings, out of the focus of the parents neglected)

Ethical dilemmas more difficult (parent decide for children)

-          Care is longer in many cases

-          Assessing symptoms is more complicated (atm developing IPOS for children)

-          Multidisciplinary approach

-          Community services have to be also involved (Bc normally care is longer)

-          Care for fetus before giving birth and recently after (till 7 days)

-          The best interest of fetus

-          Supportive care for parents

-          Before giving birth: decisions up to the mother, afterwards up to the physicians