Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent

被引:99
作者
Dalton, Louise [1 ]
Rapa, Elizabeth [1 ]
Ziebland, Sue [3 ]
Rochat, Tamsen [5 ,7 ]
Kelly, Brenda [2 ,8 ]
Hanington, Lucy [1 ]
Bland, Ruth [4 ,10 ,11 ,12 ]
Yousafzai, Aisha [13 ]
Stein, Alan [1 ,4 ]
Betancourt, T. [14 ]
Bluebond-Langner, M. [15 ]
D'Souza, C. [16 ]
Fazel, M. [1 ]
Netsi, E.
Stein, K. F. [6 ]
Harrop, E. [8 ,9 ]
Hochhauser, D. [17 ]
Kolucki, B. [18 ]
Lowney, A. C. [8 ,19 ]
Richter, L. [20 ]
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] Univ Bath, Dept Psychol, Bath, Avon, England
[7] Human Sci Res Council, Johannesburg, South Africa
[8] Oxford Univ Hosp NHS Fdn Trust, Oxford, England
[9] Helen & Douglas House, Oxford, England
[10] Inst Hlth & Wellbeing, Glasgow, Lanark, Scotland
[11] Univ Glasgow, Glasgow, Lanark, Scotland
[12] Royal Hosp Children, Glasgow, Lanark, Scotland
[13] Harvard TH Chan Sch Publ Hlth, Boston, MA USA
[14] Boston Coll, Boston, MA USA
[15] UCL Great Ormond St Inst Child Hlth, London, England
[16] South Canterbury Dist Hlth Board, Timaru, New Zealand
[17] UCL Canc Inst, London, England
[18] UNICEF, Commun & Children Difficult Circumstances, New York, NY USA
[19] Sir Michael Sobell House, Oxford, England
[20] Univ Witwatersrand, Johannesburg, South Africa
关键词
MATERNAL HIV DISCLOSURE; BREAST-CANCER; QUALITATIVE INTERVIEW; AMAGUGU INTERVENTION; POSITIVE MOTHERS; SOUTH-AFRICA; EXPERIENCES; SUPPORT; FAMILY; DEATH;
D O I
10.1016/S0140-6736(18)33202-1
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Many adults diagnosed with a life-threatening condition have children living at home; they and their partners face the dual challenge of coping with the diagnosis while trying to maintain a parenting role. Parents are often uncertain about how, when, and what to tell their children about the condition, and are fearful of the effect on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Health-care professionals have a key role in supporting and guiding parents and caregivers to communicate with their children about the diagnosis. However, the practical and emotional challenges of communicating with families are compounded by a scarcity of evidence-based guidelines. This Review considers children's awareness and understanding of their parents' condition, the effect of communication around parental life-threatening condition on their wellbeing, factors that influence communication, and the challenges to achieving effective communication. Children's and parents' preferences about communication are outlined. An expert workshop was convened to generate principles for health-care professionals, intended as practical guidance in the current absence of empirically derived guidelines.
引用
收藏
页码:1164 / 1176
页数:13
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