Literature DB >> 12574042

Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents.

Bridget Young1, Mary Dixon-Woods, Kate C Windridge, David Heney.   

Abstract

OBJECTIVES: To examine young people's and parents' accounts of communication about cancer in childhood.
DESIGN: Semistructured interviews analysed using the constant comparative method.
SETTING: Paediatric oncology unit. PARTICIPANTS: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour.
RESULTS: Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors.
CONCLUSIONS: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.

Entities:  

Keywords:  Empirical Approach; Professional Patient Relationship

Mesh:

Year:  2003        PMID: 12574042      PMCID: PMC143524          DOI: 10.1136/bmj.326.7384.305

Source DB:  PubMed          Journal:  BMJ        ISSN: 0959-8138


  10 in total

Review 1.  Partnerships with children.

Authors:  M Dixon-Woods; B Young; D Heney
Journal:  BMJ       Date:  1999-09-18

2.  No news is not good news: information preferences of patients with cancer.

Authors:  Lesley Fallowfield; Sarah Ford; Shon Lewis
Journal:  Psychooncology       Date:  1995-10       Impact factor: 3.894

3.  Does "telling" less protect more? Relationships among age, information disclosure, and what children with cancer see and feel.

Authors:  C J Claflin; O A Barbarin
Journal:  J Pediatr Psychol       Date:  1991-04

4.  Commentary: grounded theory and the constant comparative method.

Authors:  J Green
Journal:  BMJ       Date:  1998-04-04

Review 5.  Doctor-parent-child communication. A (re)view of the literature.

Authors:  K Tates; L Meeuwesen
Journal:  Soc Sci Med       Date:  2001-03       Impact factor: 4.634

6.  Cancer patients' information needs and information seeking behaviour: in depth interview study.

Authors:  G M Leydon; M Boulton; C Moynihan; A Jones; J Mossman; M Boudioni; K McPherson
Journal:  BMJ       Date:  2000-04-01

7.  Children's contributions to pediatric outpatient encounters.

Authors:  A M van Dulmen
Journal:  Pediatrics       Date:  1998-09       Impact factor: 7.124

8.  Qualitative interview study of communication between parents and children about maternal breast cancer.

Authors:  J Barnes; L Kroll; O Burke; J Lee; A Jones; A Stein
Journal:  BMJ       Date:  2000 Aug 19-26

9.  Information and participation preferences among cancer patients.

Authors:  B R Cassileth; R V Zupkis; K Sutton-Smith; V March
Journal:  Ann Intern Med       Date:  1980-06       Impact factor: 25.391

Review 10.  Children as patients: a communications process study in family practice.

Authors:  T J Stewart; R H Pantell; J K Dias; P A Wells; A W Ross
Journal:  J Fam Pract       Date:  1981-11       Impact factor: 0.493

  10 in total
  46 in total

Review 1.  Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature.

Authors:  Gwendolyn P Quinn; Devin Murphy; Caprice Knapp; Daniel K Stearsman; Kathy L Bradley-Klug; Kelly Sawczyn; Marla L Clayman
Journal:  J Adolesc Health       Date:  2011-03-15       Impact factor: 5.012

2.  Parents are not homogeneous.

Authors:  Tom A Laws
Journal:  BMJ       Date:  2003-05-10

3.  Discrimination against children.

Authors:  E Webb
Journal:  Arch Dis Child       Date:  2004-09       Impact factor: 3.791

4.  An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

Authors:  Patricia A Garvie; Jianping He; Jichuan Wang; Lawrence J D'Angelo; Maureen E Lyon
Journal:  J Pain Symptom Manage       Date:  2012-07-07       Impact factor: 3.612

5.  End-of-life experiences in adolescents dying with cancer.

Authors:  Cynthia J Bell; Jodi Skiles; Kamnesh Pradhan; Victoria L Champion
Journal:  Support Care Cancer       Date:  2009-08-29       Impact factor: 3.603

6.  Multisystemic Therapy Improves the Patient-Provider Relationship in Families of Adolescents with Poorly Controlled Insulin Dependent Diabetes.

Authors:  April Idalski Carcone; Deborah A Ellis; Xinguang Chen; Sylvie Naar; Phillippe B Cunningham; Kathleen Moltz
Journal:  J Clin Psychol Med Settings       Date:  2015-09

7.  Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.

Authors:  Victoria A Miller; Chris Feudtner; Abbas F Jawad
Journal:  J Empir Res Hum Res Ethics       Date:  2017-03-14       Impact factor: 1.742

8.  Views of treatment decision making from adolescents with chronic illnesses and their parents: a pilot study.

Authors:  Jennifer M Knopf; Richard W Hornung; Gail B Slap; Robert F DeVellis; Maria T Britto
Journal:  Health Expect       Date:  2008-12       Impact factor: 3.377

Review 9.  Prognostic Disclosures to Children: A Historical Perspective.

Authors:  Bryan A Sisk; Myra Bluebond-Langner; Lori Wiener; Jennifer Mack; Joanne Wolfe
Journal:  Pediatrics       Date:  2016-08-25       Impact factor: 7.124

10.  Mother-child communication and maternal depressive symptoms in families of children with cancer: integrating macro and micro levels of analysis.

Authors:  Erin M Rodriguez; Madeleine J Dunn; Teddi Zuckerman; Leighann Hughart; Kathryn Vannatta; Cynthia A Gerhardt; Megan Saylor; C Melanie Schuele; Bruce E Compas
Journal:  J Pediatr Psychol       Date:  2013-04-24
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