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

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-center, 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.

- INCLUSION CRITERIA:

- Participants must have been in a partnership at the time the child was diagnosed with
cancer or NF1. At least one participant must be the biological/legal parent of the
child; the partner may or may not be a biological/legal parent. Divorced parents who
separated or divorced during or after the child s treatment can participate in this
study.

- The participant s child must be between 1-24 years of age.

- Participants must be 18 years of age or older.

- Participants must be fluent in the English language.

- The participant s child must have been:

- diagnosed with cancer at least 3 months prior to enrollment on this study and be
currently receiving treatment OR

- have completed treatment at age 21 or younger (without evidence of disease)
within the previous 3 years OR

- diagnosed with 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.

- Able to understand and willing to sign the informed consent document.

EXCLUSION CRITERIA:

- Parents of a child with cancer OR NF1 without a partner/spouse during the child s
treatment for cancer or NF1 are excluded from this study.

- Parents who were not living with the child during his or her treatment and involved in
the child s care.

- Parents of children who are enrolled in hospice care.

- Presence of psychotic symptoms or severe psychological distress, which in the judgment
of the Principal or Associate Investigator would compromise the participants ability
to engage in the study procedures or results.