TY - JOUR
T1 - Parents of children with atopic diseases - experiences with care and the interaction with healthcare professionals over time
AU - Færk, Gitte
AU - Søndergaard, Elisabeth
AU - Skov, Lone
AU - Thyssen, Jacob Pontoppidan
AU - Hansen, Kirsten Skamstrup
AU - Reventlow, Susanne
PY - 2024/12
Y1 - 2024/12
N2 - OBJECTIVE: To explore how the parents of children with atopic dermatitis and allergic diseases such as food allergy, allergic rhinoconjunctivitis, and asthma experience interactions with the Danish healthcare system over time.DESIGN AND METHODS: A qualitative design with individual in-depth interviews. The analysis was inspired by Systematic Text Condensation.SUBJECTS: Eleven parents of children with atopic dermatitis and allergic diseases who received treatment at hospitals in the Capital Region of Denmark. The families had experiences of cross-sectoral patient care.RESULTS: Despite having the same diseases, the children's care pathways were very different. Mapping demonstrated the intricacy of care pathways for this group of children. We identified three aspects that impacted interaction with healthcare: responsibility, tasks, and roles. The families experienced care when the distribution of tasks and responsibilities associated with treatment and system navigation were consistent with both their expectations and their actual experiences. At the same time, families frequently experienced limited collaboration between healthcare professionals resulting in perceived fragmented care and an extended role for parents as care coordinators. Families felt cared for when healthcare professionals knew both their biomedical and biographical circumstances, and adjusted the level of support and care in accordance with the families' particular needs, expectations, and evolving competences.CONCLUSION: We suggest that a possible pathway to improve care may be through a partnership approach as part of family-centered care, with general practitioners having a key role in helping to articulate the individual needs and expectations of each family.
AB - OBJECTIVE: To explore how the parents of children with atopic dermatitis and allergic diseases such as food allergy, allergic rhinoconjunctivitis, and asthma experience interactions with the Danish healthcare system over time.DESIGN AND METHODS: A qualitative design with individual in-depth interviews. The analysis was inspired by Systematic Text Condensation.SUBJECTS: Eleven parents of children with atopic dermatitis and allergic diseases who received treatment at hospitals in the Capital Region of Denmark. The families had experiences of cross-sectoral patient care.RESULTS: Despite having the same diseases, the children's care pathways were very different. Mapping demonstrated the intricacy of care pathways for this group of children. We identified three aspects that impacted interaction with healthcare: responsibility, tasks, and roles. The families experienced care when the distribution of tasks and responsibilities associated with treatment and system navigation were consistent with both their expectations and their actual experiences. At the same time, families frequently experienced limited collaboration between healthcare professionals resulting in perceived fragmented care and an extended role for parents as care coordinators. Families felt cared for when healthcare professionals knew both their biomedical and biographical circumstances, and adjusted the level of support and care in accordance with the families' particular needs, expectations, and evolving competences.CONCLUSION: We suggest that a possible pathway to improve care may be through a partnership approach as part of family-centered care, with general practitioners having a key role in helping to articulate the individual needs and expectations of each family.
KW - Adolescent
KW - Adult
KW - Asthma/therapy
KW - Child
KW - Child, Preschool
KW - Conjunctivitis, Allergic/therapy
KW - Delivery of Health Care
KW - Denmark
KW - Dermatitis, Atopic/therapy
KW - Female
KW - Food Hypersensitivity/therapy
KW - Health Personnel
KW - Humans
KW - Infant
KW - Interviews as Topic
KW - Male
KW - Parents/psychology
KW - Professional-Family Relations
KW - Qualitative Research
KW - Rhinitis, Allergic/therapy
U2 - 10.1080/02813432.2024.2357794
DO - 10.1080/02813432.2024.2357794
M3 - Article
C2 - 38829768
SN - 0281-3432
VL - 42
SP - 550
EP - 559
JO - Scandinavian Journal of Primary Health Care
JF - Scandinavian Journal of Primary Health Care
IS - 4
ER -