Relationship Stressors in Parents of Children With Cancer or Neurofibromatosis Type 1 (NF1)

Titre officiel

Understanding the Perceived Influence of Childhood Cancer and NF1 on the Parents' Marital/Partner Relationship: A Descriptive Study

Sommaire:

Contexte:

  • Les maladies graves telles que le cancer peuvent causer des niveaux de stress élevés dans une famille. Si un diagnostic révèle qu’un enfant est atteint de cancer, les parents font face à un grand nombre de facteurs de stress, et chacun d’eux peut tendre les rapports. Plusieurs parents s’efforcent effectivement de s’adapter aux changements du rôle parental qui accompagnent souvent le traitement d’un enfant atteint de cancer. La méthode que les parents choisissent pour affronter le stress peut, soit renforcer la relation, soit l’affaiblir. Les niveaux de stress peuvent aussi affecter les soins offerts à l’enfant atteint de cancer. Les chercheurs veulent mieux comprendre les moments et les évènements déterminants durant le traitement de l’enfant lorsque la relation est fortement sous pression et/ou renforcée.

Objectifs:

- Étudier de quelle manière le stress affecte les rapports entre les parents dont l’enfant est atteint de cancer.

Admissibilité:

  • Les parents d’un enfant (dont l’âge est situé entre 1 et 24 ans) atteint de cancer d’après le diagnostic.
  • Il faut que les participants soient en relation au moment où le diagnostic a révélé que l’enfant était atteint de cancer. Au moins l’un des parents doit être le parent biologique ou le parent légal de l’enfant.

Conception:

  • Les participants doivent remplir un questionnaire en ligne ou en version papier. Cet exercice durera environ 20 minutes. Les questions portent sur l’expérience dans la gestion des cas où le diagnostic révèle qu’un enfant est atteint de cancer et les répercussions de cette situation sur le conjoint ou la conjointe.
  • Certains participants seront aussi soumis à une entrevue approfondie qui durera près d’une heure. Au cours de cette entrevue, d’autres questions seront posées sur le diagnostic et le traitement du cancer et sur ses répercussions sur la relation entre les parents concernés.
  • Le traitement ne sera pas fourni dans le cadre de cette étude.

Description de l'essai

Primary Outcome:

  • Stress impact communication
Secondary Outcome:
  • Dyadic coping
  • Stressful timepoints
  • Perception comparison
Background:
  • Parents face numerous stressors when their child is diagnosed with cancer or NF1, each of which can strain a marriage/partnership.
  • Marital/partner relationship dynamics are often not assessed or addressed when providing health care for children with cancer or NF1. Many parents struggle to effectively cope with the changes in parenting roles that frequently accompany treatment of childhood cancer or NF1.
  • How parents cope with these stressors can strengthen or weaken the relationship, and can impact the entire family, including the care to the child undergoing cancer or NF1 treatments.
  • Limited studies have examined relationship stress or satisfaction during a child s illness trajectory for cancer or NF1 or the critical time points and events during the child s illness trajectory when the relationship becomes most stressed and/or strengthened. Objectives:
  • To explore whether the stress associated with having a child with cancer or NF1 is perceived to impact the communication between partners.
  • To explore whether positive dyadic coping (joint decision making, joint problem solving, sharing responsibilities) is perceived to have strengthened the marital relationship/partnership following the child s diagnosis with cancer or NF1.
  • To describe the time points and events during the child s illness trajectory when the parents relationship becomes most stressed and/or strengthened.
  • To compare the perceptions of various subgroups in the sample, (e.g. parents who score either high or low on a marital stress scale, mothers versus fathers) statistically or qualitatively as the distribution of the characteristics of the sample allow. Eligibility:
  • Participants must have been in a partnership at the time the child was diagnosed with cancer or NF1. At least one of the participating parents must be a biological or legal parent of the child. If a divorce/separation occurred with a previous partner during/after the child s diagnosis, the other partner will be invited to participate.
  • The participant s child must be between 1-24 years of age.
  • There are 3 groups of participants being recruited: 1) those who have a child who has been diagnosed with cancer at least 3 months prior to enrolling on this study and are currently undergoing cancer treatment, 2) those who have completed treatment at age 21 or younger (without evidence of disease) within the previous 3 years, and 3) those who have a child who has been diagnosed with NF1 at least 3 months prior to enrolling on this study.
  • Participants must be fluent in the English language
  • The participant s child must have been diagnosed with cancer or NF1 at least 3 months prior to enrollment on this study.
  • Participants must verbalize willingness to discuss the impact of their child s cancer or NF1 diagnosis on their relationship. Design:
  • Cross-sectional, multi-centre, exploratory study utilizing a convenience sample to explore the parents perception of how the child s cancer or NF1 diagnosis, treatment, decision making and other aspects of care are addressed and impact the martial relationship/partnership.
  • Subjects will complete a self-administered measure that addresses potential stresses experienced in the partnership since the child s diagnosis and how each are either resolved or create a divide in the relationship.
  • Subjects who experience a high or low degree of relationship stress on a standardized marital stress form (a score greater than one standard deviation from the norm) will be invited to participate in a qualitative interview, that further explores which components of parenting a child with cancer is most challenging on the relationship.
  • Up to 360 participants will be enrolled onto this study (up to 180 couples). Subjects may be offered a gift card ($20 Target gift card at NIH) upon completion of the questionnaire for their time and inconvenience, where available. Due to limitations with funding, participants enrolled after July 2016 will not receive a gift card.

Voir cet essai sur ClinicalTrials.gov

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