Parent's experiences of living with a child with Peadiatric Feeding Disorder: : An interview study in Sweden
(2023) In Scandinavian Journal of Caring Sciences 37(4). p.949-958- Abstract
- Introduction
Children affected by Paediatric Feeding Disorder (PFD) cannot consume enough nourishment by mouth. PFD is highly prevalent and can affect the child's growth and development as well as family life.
Aim
To illuminate Swedish parents’ experiences of living with a child with PFD.
Method
Semi-structured interviews via telephone or video calls were conducted with 14 purposefully recruited mothers and six fathers. The interviews were analysed using content analysis. Ethics approval was obtained, and the parents all gave informed consent.
Results
Four overarching themes emerged: Living with stress; Advocating for the child; Adapting family life; and Gaining hope. Parents described fearing for... (More) - Introduction
Children affected by Paediatric Feeding Disorder (PFD) cannot consume enough nourishment by mouth. PFD is highly prevalent and can affect the child's growth and development as well as family life.
Aim
To illuminate Swedish parents’ experiences of living with a child with PFD.
Method
Semi-structured interviews via telephone or video calls were conducted with 14 purposefully recruited mothers and six fathers. The interviews were analysed using content analysis. Ethics approval was obtained, and the parents all gave informed consent.
Results
Four overarching themes emerged: Living with stress; Advocating for the child; Adapting family life; and Gaining hope. Parents described fearing for their child's life and health, feeling pressure over meals and being emotionally affected. They told of experiencing a lack of understanding from healthcare professionals, friends and family. Parents expressed a struggle for help, the need for early interventions and more effective treatment, and developed strategies for coping with the demands of feeding and caring for their child, accepting their living reality. Finding support from a network helped, but the adaptation of daily life affected their family relations. They felt gratitude towards helpful professionals and relief and joy when their child was doing better.
Conclusions
A more cohesive chain of care is important for children with PFD, and guidelines and educational support for healthcare providers are needed. Parental experiences provide a base for knowledge for further development of early detection and intervention for children with PFD. (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/2bd4d981-531c-4904-8d6a-fecc361972cf
- author
- Lamm, Kajsa
LU
; Kristensson Hallström, Inger LU and Landgren, Kajsa LU
- organization
- publishing date
- 2023
- type
- Contribution to journal
- publication status
- published
- subject
- in
- Scandinavian Journal of Caring Sciences
- volume
- 37
- issue
- 4
- pages
- 949 - 958
- publisher
- Wiley-Blackwell
- external identifiers
-
- pmid:35142385
- scopus:85124766061
- ISSN
- 1471-6712
- DOI
- 10.1111/scs.13070
- project
- LUC3 - Lund University Child Centered Care
- language
- English
- LU publication?
- yes
- id
- 2bd4d981-531c-4904-8d6a-fecc361972cf
- date added to LUP
- 2022-04-06 13:57:56
- date last changed
- 2025-04-04 15:20:48
@article{2bd4d981-531c-4904-8d6a-fecc361972cf, abstract = {{Introduction<br/>Children affected by Paediatric Feeding Disorder (PFD) cannot consume enough nourishment by mouth. PFD is highly prevalent and can affect the child's growth and development as well as family life.<br/><br/>Aim<br/>To illuminate Swedish parents’ experiences of living with a child with PFD.<br/><br/>Method<br/>Semi-structured interviews via telephone or video calls were conducted with 14 purposefully recruited mothers and six fathers. The interviews were analysed using content analysis. Ethics approval was obtained, and the parents all gave informed consent.<br/><br/>Results<br/>Four overarching themes emerged: Living with stress; Advocating for the child; Adapting family life; and Gaining hope. Parents described fearing for their child's life and health, feeling pressure over meals and being emotionally affected. They told of experiencing a lack of understanding from healthcare professionals, friends and family. Parents expressed a struggle for help, the need for early interventions and more effective treatment, and developed strategies for coping with the demands of feeding and caring for their child, accepting their living reality. Finding support from a network helped, but the adaptation of daily life affected their family relations. They felt gratitude towards helpful professionals and relief and joy when their child was doing better.<br/><br/>Conclusions<br/>A more cohesive chain of care is important for children with PFD, and guidelines and educational support for healthcare providers are needed. Parental experiences provide a base for knowledge for further development of early detection and intervention for children with PFD.}}, author = {{Lamm, Kajsa and Kristensson Hallström, Inger and Landgren, Kajsa}}, issn = {{1471-6712}}, language = {{eng}}, number = {{4}}, pages = {{949--958}}, publisher = {{Wiley-Blackwell}}, series = {{Scandinavian Journal of Caring Sciences}}, title = {{Parent's experiences of living with a child with Peadiatric Feeding Disorder: : An interview study in Sweden}}, url = {{http://dx.doi.org/10.1111/scs.13070}}, doi = {{10.1111/scs.13070}}, volume = {{37}}, year = {{2023}}, }