Parental experiences of adolescent cancer‐related distress: A qualitative study

Abstract Objective Cancer-related fatigue is common, disabling, and chronic, but professional help is not necessarily sought. Parents can support symptom management and facilitate help-seeking. This study explored parental experiences of their adolescent’s cancer-related fatigue and what they do to help. Methods Qualitative semi-structured interviews were conducted with 21 parents of 17 adolescents aged 12–18 who were previously diagnosed with cancer. Reflexive thematic analysis was used to analyze the data. Results Three high-order themes were generated. Firstly, “fatigue is inevitable and unpredictable.” This encompassed parental perceptions of fatigue as variable, distinct from normal tiredness, and linked to sleep and mood. Fatigue was seen as arising from cancer, which rendered parents helpless. Secondly, “fatigue is disruptive to normal life” beyond cancer treatment, which is contrary to expectations. Thirdly, parents managed fatigue by trying to balance the adolescent’s desires for normality and their own perception of what is realistic with encouraging activities, and by seeking support from others. Conclusions Parents see adolescent cancer-related fatigue as multi-faceted and experience it as unpredictable and attributed to cancer. They struggle to distinguish normal adolescent behavior from problematic fatigue, and to balance supporting and empowering the adolescent to live life to the fullest whilst also being realistic about the limitations imposed by fatigue and the benefits of activity. Parents try to manage fatigue practically but want more information about adolescent cancer-related fatigue to help establish their own and their adolescent’s expectations.

Download Full-text

Parental experiences and perspectives on the value of seizure detection while caring for a child with epilepsy: A qualitative study

Epilepsy & Behavior ◽

10.1016/j.yebeh.2021.108323 ◽

2021 ◽

Vol 124 ◽

pp. 108323

Author(s):

Anouk van Westrhenen ◽

Wendela F.M. de Lange ◽

Eveline E.O. Hagebeuk ◽

Richard H.C. Lazeron ◽

Roland D. Thijs ◽

...

Keyword(s):

Qualitative Study ◽

Seizure Detection ◽

Parental Experiences

Download Full-text

Multi-family therapy in anorexia nervosa—A qualitative study of parental experiences

Eating Disorders ◽

10.1080/10640266.2015.1034053 ◽

2015 ◽

Vol 24 (2) ◽

pp. 186-197 ◽

Cited By ~ 11

Author(s):

Sofie Engman-Bredvik ◽

Nivia Carballeira Suarez ◽

Richard Levi ◽

Karin Nilsson

Keyword(s):

Anorexia Nervosa ◽

Family Therapy ◽

Qualitative Study ◽

Parental Experiences

Download Full-text

Parental Experiences of the Pediatric Day Surgery Pathway and the Needs for a Digital Gaming Solution: Qualitative Study

JMIR Medical Informatics ◽

10.2196/23626 ◽

2020 ◽

Vol 8 (11) ◽

pp. e23626

Author(s):

Arja Rantala ◽

Miia M Jansson ◽

Otto Helve ◽

Pekka Lahdenne ◽

Minna Pikkarainen ◽

...

Keyword(s):

Qualitative Study ◽

Waiting Times ◽

Day Surgery ◽

Care Providers ◽

Children And Families ◽

Digital Gaming ◽

Main Category ◽

Parental Experiences ◽

Parental Guidance ◽

Centered Care

Background The parents of hospitalized children are often dissatisfied with waiting times, fasting, discharge criteria, postoperative pain relief, and postoperative guidance. Parents’ experiences help care providers to provide effective, family-centered care that responds to parents’ needs throughout the day surgery pathway. Objective The objective of our study was to describe parental experiences of the pediatric day surgery pathway and the needs for a digital gaming solution in order to facilitate the digitalization of these pathways. Methods This was a descriptive qualitative study. The participants (N=31) were parents whose children were admitted to the hospital for the day surgical treatments or magnetic resonance imaging. The data were collected through an unstructured, open-ended questionnaire; an inductive content analysis was conducted to analyze the qualitative data. Reporting of the study findings adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Results Parental experiences of the children’s day surgery pathway included 3 main categories: (1) needs for parental guidance, (2) needs for support, and (3) child involved in his or her own pathway (eg, consideration of an individual child and preparation of child for treatment). The needs for a digital gaming solution were identified as 1 main category—the digital gaming solution for children and families to support care. This main category included 3 upper categories: (1) preparing children and families for the day surgery via the solution, (2) gamification in the solution, and (3) connecting people through the solution. Conclusions Parents need guidance and support for their children’s day surgery care pathways. A digital gaming solution may be a relevant tool to support communication and to provide information on day surgeries. Families are ready for and are open to digital gaming solutions that provide support and guidance and engage children in the day surgery pathways.

Download Full-text