title: Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study.
abstract: In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life.
  
  
  CONCLUSIONS
  Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands. • Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance. • Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life. • Professionals need insight into the parents' aims and tasks from the parental perspective to strengthen parents' resilience.
authors.affiliation: Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Heidelberglaan 100, 3508 GA, Utrecht, The Netherlands. l.m.verberne@umcutrecht.nl.
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Verberne
authors.affiliation: Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Heidelberglaan 100, 3508 GA, Utrecht, The Netherlands.
authors.forename: Marijke C
authors.initials: MC
authors.lastname: Kars
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital, Academic Medical Center, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
authors.forename: Antoinette Y N
authors.initials: AY
authors.lastname: Schouten-van Meeteren
authors.affiliation: Department of Pediatrics, Emma Children's Hospital, Academic Medical Center, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
authors.forename: Diederik K
authors.initials: DK
authors.lastname: Bosman
authors.affiliation: Department of Pediatrics, Emma Children's Hospital, Academic Medical Center, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
authors.forename: Derk A
authors.initials: DA
authors.lastname: Colenbrander
authors.affiliation: Psychosocial Department, Emma Children's Hospital, Academic Medical Center, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.|Princess Máxima Center for Pediatric Oncology, Lundlaan 6, 3584 AE, Utrecht, The Netherlands.
authors.forename: Martha A
authors.initials: MA
authors.lastname: Grootenhuis
authors.affiliation: Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Heidelberglaan 100, 3508 GA, Utrecht, The Netherlands.
authors.forename: Johannes J M
authors.initials: JJ
authors.lastname: van Delden
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000628:therapy*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D010166:Palliative Care / Q000379:methods* / Q000523:psychology; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D013315:Stress, Psychological / Q000523:psychology; D019452:Terminally Ill
keywords: Family adjustment; Home care; Paediatric palliative care; Parental caregiving; Parenting