Fenella J Gill1,2, Zahraa Hashem2, Roswitha Stegmann3, Samar M Aoun3,4. 1. Perth Children's Hospital, Child and Adolescent Health Service, Nedlands, Western Australia, Australia. 2. School of Nursing, Midwifery and Paramedicine, Faculty Health Sciences, Curtin University, Bentley, Western Australia, Australia. 3. School of Psychology and Public Health, La Trobe University, Victoria, Australia. 4. Perron Institute for Neurological and Translational Science, Western Australia, Australia.
Abstract
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
Entities:
Keywords:
Paediatric palliative care; cancer; children; health professionals; life-limiting illness; non-cancer; parents; support needs
Authors: Joan E Haase; Kristin Stegenga; Sheri L Robb; Mary C Hooke; Debra S Burns; Patrick O Monahan; Timothy E Stump; Amanda K Henley; Paul R Haut; Brooke Cherven; Lona Roll; Anne-Marie Langevin; Rita H Pickler; Karen Albritton; DeAnna Hawkins; Erin Osterkamp; Pauline Mitby; Jackie Smith; Virginia R Diaz; Erica Garcia-Frausto; Margo Moore Journal: Cancer Nurs Date: 2021-11-24 Impact factor: 2.760
Authors: Karin Zimmermann; Katrin Marfurt-Russenberger; Eva Cignacco; Eva Bergstraesser Journal: BMC Palliat Care Date: 2022-05-04 Impact factor: 3.113