Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study

TY - JOUR

T1 - Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study

AU - Coombes, Lucy

AU - Braybrook, Debbie

AU - Roach, Anna

AU - Scott, Hannah

AU - Harðardóttir, Daney

AU - Bristowe, Katherine

AU - Ellis-Smith, Clare

AU - Bluebond-Langner, Myra

AU - Fraser, Lorna K.

AU - Downing, Julia

AU - Farsides, Bobbie

AU - Murtagh, Fliss E.M.

AU - Harding, Richard

AU - on behalf of C-POS

N1 - Funding Information: The Children’s Palliative care Outcome Scale (CPOS) Study Steering Group members are as follows: AK Anderson, Jo Bayly, Lydia Bates (PPI), Debbie Box, Rachel Burman, Lizzie Chambers, Alan Craft, Finella Craig, Aislinn Delaney, Jonathan Downie, Sara Fovargue, Jane Green (PPI), Jay Halbert, Julie Hall-Carmichael, Irene Higginson, Michelle Hills, Mevhibe Hocaoglu, Vanessa Holme, Gill Hughes, Joanna Laddie, Angela Logun (PPI), Eve Malam, Steve Marshall, Linda Maynard, Andrina McCormack, Catriona McKeating, Lis Meates, Eve Namisango, Veronica Neefjes, Cheryl Norman, Susan Picton, Christina Ramsenthaler, Ellen Smith, Michelle Ward, Frances Waite, Mark Whiting. This study is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. Funding Information: The Children’s Palliative care Outcome Scale (CPOS) Study Steering Group members are as follows: AK Anderson, Jo Bayly, Lydia Bates (PPI), Debbie Box, Rachel Burman, Lizzie Chambers, Alan Craft, Finella Craig, Aislinn Delaney, Jonathan Downie, Sara Fovargue, Jane Green (PPI), Jay Halbert, Julie Hall-Carmichael, Irene Higginson, Michelle Hills, Mevhibe Hocaoglu, Vanessa Holme, Gill Hughes, Joanna Laddie, Angela Logun (PPI), Eve Malam, Steve Marshall, Linda Maynard, Andrina McCormack, Catriona McKeating, Lis Meates, Eve Namisango, Veronica Neefjes, Cheryl Norman, Susan Picton, Christina Ramsenthaler, Ellen Smith, Michelle Ward, Frances Waite, Mark Whiting. This study is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. Funding Information: CPOS was funded by a European Research Council’s Consolidator Award (grant ID: 772635) with the overall aim to develop and validate a person-centred outcome measure for children, young people, and their families affected by life-limiting and life-threatening condition. Publisher Copyright: © 2022, The Author(s).

PY - 2022/10

Y1 - 2022/10

N2 - This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children’s hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5–17 years), 40 parents (of children 0–17 years), 13 siblings (5–17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing ‘normality’, described as children’s desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. Conclusion: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. What is Known:• Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis.• Child-centred care provision must be directed by children’s perspectives on their priorities for care. What is New:• Social and educational activities are more important to children with life-limiting conditions than their medical concerns.• A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

AB - This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children’s hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5–17 years), 40 parents (of children 0–17 years), 13 siblings (5–17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing ‘normality’, described as children’s desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. Conclusion: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. What is Known:• Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis.• Child-centred care provision must be directed by children’s perspectives on their priorities for care. What is New:• Social and educational activities are more important to children with life-limiting conditions than their medical concerns.• A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

KW - Children

KW - End of life care

KW - Normality

KW - Paediatrics

KW - Palliative care

KW - Symptom assessment

UR - http://www.scopus.com/inward/record.url?scp=85135803704&partnerID=8YFLogxK

U2 - 10.1007/s00431-022-04566-w

DO - 10.1007/s00431-022-04566-w

M3 - Article

C2 - 35953678

AN - SCOPUS:85135803704

SN - 0340-6199

VL - 181

SP - 3739

EP - 3752

JO - European Journal of Pediatrics

JF - European Journal of Pediatrics

IS - 10

ER -