Highlights
- •Narrative health diaries are commonly used in pediatric settings.
- •Narrative health diaries in children are used to describe experiences of illness.
- •Adolescents with chronic diseases and their families are the most common diarists.
- •Diaries are usually used at home, at the hospital or in the school setting.
- •The narrative health diary is an ‘adaptable’ tool to different settings and aims.
Abstract
Problem
Health diaries with both clinical and narrative elements have been widely used in
pediatrics to study children's and families' experiences of illness and coping strategies.
The objective of this study is to obtain a synthesis of the literature about narrative
health diaries using the PRISMA extension for scoping reviews.
Eligibility criteria
Sources were limited to: English language; narrative diaries; children/adolescents
and/or parents/caregivers.
Sample
The following databases were searched: PubMed, Embase and CINAHL with no time limits.
Results
Among 36 articles included the most common context where a diary was implemented was
the home (61%), the hospital (17%) and the school (14%). The most common diarist is
the child or adolescent (50%). Paper diary was the most common type (53%), followed
by the video diary (19%), the e-diary (8%) or the audio diary (8%). None of the studies
explored the impact of the use of diaries on patient outcomes.
Conclusions
The narrative health diary is used to report patient experiences of illness or common
life from the point of view of the child, adolescent or other family members. The
diversity of the diaries found shows how the narrative diary may be ‘adapted’ to different
settings and pediatric populations.
Implications
The narrative diary is a relevant tool for the exploration of children's and adolescents'
experiences of illness and common life. Studies are still needed to describe the impact
of narrative diaries keeping on children's health outcomes.
Keywords
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pediatric Nursing: Nursing Care of Children and FamiliesAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Experiences of children undergoing dental treatment under general anesthesia: A qualitative study in Canada.Pediatrics. 2019; 144: 5
- Diaries as a source of suffering narratives: A critical commentary.Health, Risk & Society. 2006; 8: 43-58
- Mothers’ experiences of caring for children receiving growth hormone treatment.Journal of Pediatric Nursing. 2019; 49: e63-e73
- Mobile health adoption in mental health: User experience of a mobile health app for patients with an eating disorder.JMIR mHealth and uHealth. 2019; 7e12920
- Children’s caregiving of HIV-infected parents accessing treatment in western Kenya: Challenges and coping strategies.African Journal of AIDS Research. 2012; 11: 203-213
- Scoping studies: Towards a methodological framework.International Journal of Social Research Methodology. 2005; 8: 19-32
- The impact of intensive care unit diaries on patients’ and relatives’ outcomes: A systematic review and meta-analysis.Critical Care. 2019; 23: 411
- Adolescent social media use and mental health from adolescent and parent perspectives.Journal of Adolescence. 2017; 61: 1-11
- Investigating how parental instructions and protective responses mediate the relationship between parental psychological flexibility and pain-related behavior in adolescents with chronic pain: A daily diary study.Frontiers in Psychology. 2019; 10: 2350
- What am I ‘living’ with? Growing up with HIV in Uganda and Zimbabwe.Sociology of Health & Illness. 2015; 37: 270-283
- Views from the inside, part 1: Routes to diagnosis — Families’ experience of living with a child with arthritis.British Journal of Occupational Therapy. 2002; 65: 374-380
- Partial sleep deprivation and food intake in participants reporting binge eating symptoms and emotional eating: Preliminary results of a quasi-experimental study.Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity. 2018; 23: 561-570
- Diagnosis and management of bladder dysfunction in neurologically normal children.Frontiers in Pediatrics. 2019; 7: 298
- The voices of young New Zealanders involved in pediatric palliative care.Journal of Palliative Care. 2013; 29: 186-192
- Parents’ lived experiences during their children’s radiotherapy.Journal of Pediatric Oncology Nursing. 2017; 34: 140-147
- How young people describe the impact of living with and beyond a cancer diagnosis: Feasibility of using social media as a research method: Young people describe their cancer experience using social media.Psycho-Oncology. 2016; 25: 1317-1323
- Recovering from chronic myeloid leukemia: The patients’ perspective seen through the lens of narrative medicine.Quality of Life Research. 2017; 26: 2739-2754
- The patient journey to diagnosis and treatment of autoinflammatory diseases.Orphanet Journal of Rare Diseases. 2018; 13: 156
- Contextualized emotional images in children’s dreams: Psychological adjustment in conditions of military trauma.International Journal of Behavioral Development. 2008; 32: 177-187
- Characteristics of postintensive care syndrome in survivors of pediatric critical illness: A systematic review.World Journal of Critical Care Medicine. 2017; 6: 124
- Feasibility and perceptions of PICU diaries.Pediatric Critical Care Medicine. 2018; 8
- Understanding the lives: How teens with CF view their worlds.Pulmonology. 2012; 224
- Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: A randomised, controlled trial.Critical Care (London, England). 2010; 14: R168
- How to increase the quality of a suffering experience: Lessons derived from the diary narratives of a dying adolescent girl.OMEGA - Journal of Death and Dying. 2018; 76: 256-295
- Sibling accounts of attention deficit hyperactivity disorder (ADHD).Family Process. 1999; 38: 117-136
- A knock on the door.Journal of Loss and Trauma. 2018; 23: 44-50
- The effect of ICU diaries on psychological outcomes and quality of life of survivors of critical illness and their relatives: A systematic review and meta-analysis.Critical Care Medicine. 2019; 47: 273-279
- How do adolescents use electronic diaries? A mixed-methods study among adolescents with depressive symptoms.Journal of Medical Internet Research. 2019; 21e11711
- The meaning of personal diaries to children and families in the paediatric intensive care unit: A qualitative study.Intensive & Critical Care Nursing. 2018; 45: 25-30
- The construction of identity on the internet: Oops! I’ve left my diary open to the whole world!.Childhood. 2006; 13: 49-68
- Reflections on the use of audio diaries to access young People’s lived experiences of HIV in Zimbabwe.Qualitative Health Research. 2019; 29: 680-692
- ‘Going between worlds’: Travelling with children with complex needs.Journal of Child Health Care. 2015; 14
- Explicating caregiving by mothers of children with complex needs in Ireland: A phenomenological study.Journal of Pediatric Nursing. 2012; 13
- Poor sleep in children with complex autism is linked to sleep disturbances of their adolescent sisters.Sleep Medicine. 2017; 1
- Through their eyes: Sisters’ experiences growing up with a preverbal sibling with autism and intellectual disability.Journal of Intellectual Disability Research. 2019; 63: 740-758
- Neonatal seizures: Case definition & guidelines for data collection, analysis, and presentation of immunization safety data.Vaccine. 2019; 37: 7596-7609
- Documents of life: An introduction to the problems and literature of a humanistic method.G. Allen & Unwin, 1983
- Documents of life.2. SAGE Publications Ltd., 2001
- Food in foster families: care, communication and conflict: food in foster families.Children & Society. 2012; 26: 100-111
- Asthma in life context: Video intervention/prevention assessmen.Pediatrics. 2000; 23
- Video diaries to capture children’s participation in the dental GA pathway.European Archives of Paediatric Dentistry. 2013; 14: 325-330
- «I felt weird and wobbly.» Child-reported impacts associated with a dental general anaesthetic.British Dental Journal. 2014; 216: E17
- Young women with disorders of sex development (DSD): Exploring their experiences of infertility.BJOG: An International Journal of Obstetrics & Gynaecology. 2013; 120: 342-343
- Young people learning to live with inflammatory bowel disease: Working with an “unclosed” diary.Qualitative Health Research. 2011; 21: 1360-1370
- Actimetry in infant sleep research: An approach to facilitate comparability.Sleep. 2019; 42 (zsz083)
- Rush specialkare keepsakes: Families celebrating the NICU journey.MCN, The American Journal of Maternal/Child Nursing. 2004; 29: 354-361
- Dietary intake and eating patterns of young children with type 1 diabetes achieving glycemic targets.BMJ Open Diabetes Research & Care. 2019; 7e000663
- Listening with care: Using narrative methods to cultivate nurses’ responsive relationships in a home visiting intervention with teen mothers.Nursing Inquiry. 2013; 13
- Personal web home pages of adolescents with cancer: Self-presentation, information dissemination, and interpersonal connection.Journal of Pediatric Oncology Nursing. 2006; 10
- Discrimination against South African adolescents orphaned by AIDS.Journal of Psychosocial Nursing and Mental Health Services. 2012; 50: 26-31
- Evaluation of a peer-based mental health support program for adolescents orphaned by AIDS in South Africa: Peer-based support for AIDS orphans.Japan Journal of Nursing Science. 2014; 11: 44-53
- PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation.Annals of Internal Medicine. 2018; 169: 467
- Patient engagement.2016
- Experiences of parents during the hospitalisation of their child in a private paediatric unit.Curationis. 2008; 14
- «One step at a time»: Analyzing young patients’ video diaries in an ethnographic tracing of fixed appliances.Children & Society. 2017; 2
- Psychological research as the phenomenologist views it..R. Valle & M. King (Eds), Existential‐phenomenological alternatives for psychology . New York: Oxford University Press., 1978: 48-79
- Research design: qualitative and quantitative approaches. Sage, London1994
Article info
Publication history
Published online: February 20, 2021
Accepted:
February 4,
2021
Received in revised form:
February 3,
2021
Received:
October 15,
2020
Identification
Copyright
© 2021 Elsevier Inc. All rights reserved.