Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study

Kukkola, Laura; Hovén, Emma; Cernvall, Martin; Essén, Louise von; Grönqvist, Helena

doi:10.1080/0284186x.2017.1374554

Cited by 22 publications

(51 citation statements)

References 24 publications

(38 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…We found a high need for more psychological support (38% during treatment, 20% after treatment, 3% currently), which is similar to other studies (during treatment: 33%–72%; after treatment 7%–30%). However, comparability is limited as different measures for assessing support were used.…”

Section: Discussionsupporting

confidence: 90%

“…Previous research has shown that parents are in need for support during and shortly after their child's treatment, and support to be a key factor for family and parental resilience . Studies have found that social support decreased in the five years after diagnosis, and that parents’ need for support decreased equally . However, parents’ support needs in the long term (>5 years after treatment) remain largely unknown, and it is unclear whether parents receive enough support to meet their needs …”

Section: Introductionmentioning

confidence: 99%

“…Studies have found that social support decreased in the five years after diagnosis, and that parents’ need for support decreased equally . However, parents’ support needs in the long term (>5 years after treatment) remain largely unknown, and it is unclear whether parents receive enough support to meet their needs …”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

“I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors

Christen

Mader

Baenziger

et al. 2019

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background Childhood cancer affects the whole family and can have a lasting impact on parents of childhood cancer survivors (CCS). We aimed to (1) describe parents’ perspective of currently experienced disadvantages and of their support needs during treatment, after treatment, and today; (2) identify characteristics associated with disadvantages and support needs; and (3) describe the use of existing support services. Procedure In this population‐based study, we identified parents of CCS (diagnosed ≤16 years of age, ≥5 years since diagnosis, aged ≥20 years at study) through the Swiss Childhood Cancer Registry (SCCR). Parents completed a questionnaire on perceived disadvantages (e.g., job‐related, financial, etc.), support needs (e.g., job‐related, financial, etc.), and socio‐demographics. Cancer‐related characteristics were available from the SCCR. We used multivariable multilevel logistic regression to identify characteristics associated with disadvantages and support needs. Results An average of 24 years after diagnosis, one‐fifth of parents (n = 59/308; 19.2%) reported disadvantages, and 7.1% reported support needs. Many parents had desired more support during (66.9%) or after (34.4%) their child's cancer treatment. Parents whose child experienced late effects (OR = 26.6; 95% CI, 2.9–241.0) or was dependent on parents (OR = 10.6; 95% CI, 2.1–53.7) reported greater current need for more support. Almost half of parents (43.5%) reported having used existing support services. Conclusions Many parents need more support during and after active treatment of their child's cancer, and some experience support needs and disadvantages long into survivorship. Better promotion of existing services for parental and familial support and setting up new services, where needed, may help parents in the long term.

show abstract

Section: Discussionsupporting

confidence: 90%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

“I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors

Christen

Mader

Baenziger

et al. 2019

Pediatric Blood & Cancer

View full text Add to dashboard Cite

show abstract

“…Recently published clinical guidelines, outlining how children diagnosed with cancer and family members should be cared for, recommend referrals to appropriate psychosocial and therapeutic support into long-term survivorship [7]. Despite these recommendations, we have recently shown that subgroups of parents report an unmet need of psychological support after end of treatment [8]. showing an unmet need of psychological support among parents of children previously treated for cancer [8] are in line with findings from one study in Australia showing that formal psychological support was difficult to access and rarely received by parents after cancer treatment completion [9].…”

Section: Introductionmentioning

confidence: 99%

“…Despite these recommendations, we have recently shown that subgroups of parents report an unmet need of psychological support after end of treatment [8]. showing an unmet need of psychological support among parents of children previously treated for cancer [8] are in line with findings from one study in Australia showing that formal psychological support was difficult to access and rarely received by parents after cancer treatment completion [9]. This study concluded factors related to staff availability, models of assessment and delivery of services, and size and location of paediatric cancer centres may hinder the provision of support.…”

Section: Introductionmentioning

confidence: 99%

Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach (Preprint)

Wikman¹,

Kukkola²,

Börjesson³

et al. 2017

Preprint

Self Cite

View full text Add to dashboard Cite

show abstract

Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial (ENGAGE)

et al. 2022

Self Cite

View full text Add to dashboard Cite

Background: Parents of children treated for cancer may experience mental health difficulties, such as depression and anxiety. There is a lack of evidencebased psychological interventions for parents, with psychological support needs unmet. An internet-administered, guided, low-intensity cognitive behavioral therapy-based (LICBT) self-help intervention may provide a solution. Methods:The feasibility and acceptability of such an intervention was examined using a single-arm feasibility trial (ENGAGE). Primary objectives examined:(1) estimates of recruitment and retention rates; (2) feasibility and acceptability of data collection instruments and procedures; and (3) intervention feasibility and acceptability. Clinical outcomes were collected at baseline, post-treatment (12 weeks), and follow-up (6 months). Results:The following progression criteria were met: sample size was exceeded within 5 months, with 11.0% enrolled of total population invited, study dropout rate was 24.0%, intervention dropout was 23.6%, missing data remained at ≤10% per measure, and no substantial negative consequences related to participation were reported. Intervention adherence was slightly lower than progression criteria (47.9%). Conclusion:Findings suggest an internet-administered, guided, LICBT self-help intervention may represent a feasible and acceptable solution for parents of children treated for cancer. With minor study protocol and intervention modifications, progression to a pilot randomized controlled trial (RCT) and subsequent superiority RCT is warranted.

show abstract

Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study

Cited by 22 publications

References 24 publications

“I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors

“I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors

Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach (Preprint)

Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial (ENGAGE)

Contact Info

Product

Resources

About