Communication with children and adolescents about the diagnosis of their own life-threatening condition

被引:107
作者
Stein, Alan [1 ,4 ]
Dalton, Louise [1 ]
Rapa, Elizabeth [1 ]
Bluebond-Langner, Myra [6 ]
Hanington, Lucy [1 ]
Stein, Kim Fredman [7 ]
Ziebland, Sue [3 ]
Rochat, Tamsen [5 ,8 ]
Harrop, Emily [9 ,10 ]
Kelly, Brenda [2 ,9 ]
Bland, Ruth [4 ,11 ,12 ,13 ]
Betancourt, T. [14 ]
D'Souza, C. [15 ]
Fazel, M. [16 ]
Netsi, E. [16 ]
Hochhauser, D. [17 ]
Kolucki, B. [18 ]
Lowney, A. C. [19 ,20 ]
Richter, L. [21 ]
Yousafzai, A. [22 ]
机构
[1] Univ Oxford, Dept Psychiat, Oxford OX3 7JX, England
[2] Univ Oxford, Nuffield Dept Womens & Reprod Hlth, Oxford, England
[3] Univ Oxford, Nuffield Dept Primary Care Hlth Sci, Oxford, England
[4] Univ Witwatersrand, Fac Hlth Sci, Sch Publ Hlth, Johannesburg, South Africa
[5] Univ Witwatersrand, Fac Hlth Sci, Sch Clin Med, Dept Paediat, Johannesburg, South Africa
[6] UCL Great Ormond St Inst Child Hlth, Louis Dundas Ctr Childrens Palliat Care, London, England
[7] Univ Bath, Dept Psychol, Bath, Avon, England
[8] Human Sci Res Council, Johannesburg, South Africa
[9] Oxford Univ Hosp NHS Fdn Trust, Oxford, England
[10] Helen & Douglas House, Oxford, England
[11] Inst Hlth & Wellbeing, Glasgow, Lanark, Scotland
[12] Univ Glasgow, Glasgow, Lanark, Scotland
[13] Royal Hosp Children, Glasgow, Lanark, Scotland
[14] Boston Coll, Boston, MA USA
[15] South Canterbury Dist Hlth Board, Timaru, New Zealand
[16] Univ Oxford, Oxford, England
[17] UCL Canc Inst, London, England
[18] UNICEF, Commun & Children Difficult Circumstances, New York, NY USA
[19] Oxford Univ Hosp NHS Fdn Trust, Oxford, England
[20] Sir Michael Sobell House, Oxford, England
[21] Univ Witwatersrand, Johannesburg, South Africa
[22] Harvard TH Chan Sch Publ Hlth, Boston, MA USA
关键词
PEDIATRIC HIV DISCLOSURE; SIOP WORKING COMMITTEE; INFECTED CHILDREN; ANTIRETROVIRAL THERAPY; DEPRESSIVE SYMPTOMS; DEATH CONCEPTS; MENTAL-HEALTH; YOUNG-ADULTS; CANCER CARE; OF-LIFE;
D O I
10.1016/S0140-6736(18)33201-X
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. Evidence-based guidelines are urgently needed for all health-care settings, from tertiary referral centres in high-income countries to resource limited environments in low-income and middle-income countries, where rates of child mortality are high. We place this Review in the context of children's developing understanding of illness and death. We review the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families, and health-care professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents, and caregivers, generated from a workshop of international experts.
引用
收藏
页码:1150 / 1163
页数:14
相关论文
共 105 条
[1]   The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in Sao Paulo, Brazil [J].
Abadía-Barrero, CE ;
LaRusso, MD .
AIDS PATIENT CARE AND STDS, 2006, 20 (01) :36-43
[2]   Parent-child communication and psychological adjustment in children with a brain tumor [J].
Adduci, Annarita ;
Jankovic, Momcilo ;
Strazzer, Sandra ;
Massimino, Maura ;
Clerici, Carlo ;
Poggi, Geraldina .
PEDIATRIC BLOOD & CANCER, 2012, 59 (02) :290-294
[3]   'I can't tell my child they are dying'. Helping parents have conversations with their child [J].
Aldridge, J. ;
Shimmon, K. ;
Miller, M. ;
Fraser, L. K. ;
Wright, B. .
ARCHIVES OF DISEASE IN CHILDHOOD-EDUCATION AND PRACTICE EDITION, 2017, 102 (04) :182-187
[4]  
Amery J., 2009, Children's palliative care in africa, P289, DOI [10.1093/acprof:oso/9780199567966.001.0001, DOI 10.1093/ACPROF:OSO/9780199567966.001.0001]
[5]  
[Anonymous], 2017, CHANG FAC MED ROL DO
[6]  
[Anonymous], 2018, GLOB HIV AIDS STAT
[7]   Disclosure of the HIV Infection Status in Children [J].
Arun, Sasi ;
Singh, Ajay K. ;
Lodha, Rakesh ;
Kabra, K. .
INDIAN JOURNAL OF PEDIATRICS, 2009, 76 (08) :805-808
[8]   Parents' Challenges and Physicians' Tasks in Disclosing Cancer to Children. A Qualitative Interview Study and Reflections on Professional Duties in Pediatric Oncology [J].
Badarau, Domnita O. ;
Wangmo, Tenzin ;
Ruhe, Katharina M. ;
Miron, Ingrid ;
Colita, Anca ;
Dragomir, Monica ;
Schildmann, Jan ;
Elger, Bernice S. .
PEDIATRIC BLOOD & CANCER, 2015, 62 (12) :2177-2182
[9]   Understanding death with limited experience in life: dying children's and adolescents' understanding of their own terminal illness and death [J].
Bates, Alan T. ;
Kearney, Julia A. .
CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE, 2015, 9 (01) :40-45
[10]   Using Health Provider Insights to Inform Pediatric HIV Disclosure: A Qualitative Study and Practice Framework from Kenya [J].
Beima-Sofie, Kristin ;
John-Stewart, Grace ;
Shah, Brandi ;
Wamalwa, Dalton ;
Maleche-Obimbo, Elizabeth ;
Kelley, Maureen .
AIDS PATIENT CARE AND STDS, 2014, 28 (10) :555-564