対処における不確実性の役割:診断されていない病状を持つ子供を持つ親の経験
対処の有効性における不確実性の役割: 診断されていない病状を持つ子供を持つ親の経験
Background:
- Parents of a child with an undiagnosed medical condition face a lot of uncertainty. They may not know how to take care of their child or how the illness will affect their family life. Researchers want to study how these parents cope with and adapt to their child s condition in light of this uncertainty. Being uncertain can make it hard for parents to adapt. But it also might give them hope. Researchers want to study how uncertain the parents think their situation is and how that affects the way they think they can cope. Personality traits, like being able to handle uncertainty and being resilient, might also affect coping.
Objectives:
- To understand how having a child with an undiagnosed illness affects the way their parents think they can cope.
Eligibility:
- Adults with a child who has a medical condition that has not been diagnosed for at least 2 years and involves at least 2 parts of the body.
Design:
- Participants will answer survey questions for about 30 minutes. The questions are about their thoughts and feelings about having a child with an undisclosed illness.
- Participants can take the survey on paper or online.
調査の概要
状態
条件
詳細な説明
The proposed study aims to test the effect of the degree of perceived uncertainty on coping efficacy among parents of children with undiagnosed medical conditions. There are many dimensions to uncertainty when there is no identified cause for a condition that affects one s child. They include illness identity, management, longevity and life planning, the meaning of the child s condition for the family and both the child s and the family s social connections. How parents of children with undiagnosed medical conditions appraise, cope and ultimately adapt to their child s condition in light of this uncertainty is largely unexplored. While high levels of perceived uncertainty may be seen as a threat to adaptation, there is evidence that parents find hope and opportunity in the uncertainty. The literature suggests that many factors affect how uncertainty is appraised, and higher levels of coping self-efficacy are associated with more effective coping and ultimately better adaptation. There is no research that systematically assesses the dimensions of uncertainty perceived by parents and whether overall perceptions of uncertainty or particular subsets are associated with coping efficacy. Further, personality traits, such as tolerance of uncertainty and resilience, may moderate these unexplored relationships. This study s conceptual framework is based on Lazarus and Folkman s Transactional Model of Stress and Coping and Mishel s Perceived Uncertainty in Illness Theory. A cross-sectional survey design will be used to quantitatively assess the relationships between dimensions of uncertainty and coping efficacy. Participants will be recruited through online support groups, website postings, and listservs. They will have the option of completing either a paper or online version of the survey.
研究の種類
入学 (実際)
連絡先と場所
研究場所
-
-
Maryland
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Bethesda、Maryland、アメリカ、20892
- National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
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-
参加基準
適格基準
就学可能な年齢
健康ボランティアの受け入れ
受講資格のある性別
サンプリング方法
調査対象母集団
Participants for this study will be English speaking men and women ages 18 years or older who have a child with an undiagnosed medical condition, who have applied to the Undiagnosed Diseases Network, and have been assigned to the NIH.
説明
- Participants for this study will be English speaking men and women ages 18 years or older who have a child with an undiagnosed medical condition who have applied to the Undiagnosed Diseases Network, and have been assigned to the NIH.
The participant may be the adoptive or biological parent.
Parents may decide between themselves who will complete the survey as only one survey per household will be allowed.
研究計画
研究はどのように設計されていますか?
デザインの詳細
- 観測モデル:COHORT
- 時間の展望:CROSS_SECTIONAL
コホートと介入
グループ/コホート |
|---|
|
Parent
Persons aged 18 years or older who have a child with an undiagnosed medical condition, who have applied to the Undiagnosed Diseases Network, and have been assigned to the NIH. |
この研究は何を測定していますか?
主要な結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
A
時間枠:Enrollment
|
To assess the dimensions of perceived uncertainty and their relative importance among parents of children with undiagnosed medicalconditions. |
Enrollment
|
|
B
時間枠:Enrollment
|
To assess the role of uncertainty in predicting coping efficacy among parents of children with undiagnosed medical conditions. |
Enrollment
|
|
C
時間枠:Enrollment
|
To determine whether tolerance for uncertainty and optimism moderate the relationship between uncertainty and coping efficacy. |
Enrollment
|
協力者と研究者
捜査官
- 主任研究者:Ellen F Macnamara、National Human Genome Research Institute (NHGRI)
研究記録日
主要日程の研究
研究開始
一次修了 (実際)
試験登録日
最初に提出
QC基準を満たした最初の提出物
最初の投稿 (推定)
学習記録の更新
投稿された最後の更新 (実際)
QC基準を満たした最後の更新が送信されました
最終確認日
詳しくは
この情報は、Web サイト clinicaltrials.gov から変更なしで直接取得したものです。研究の詳細を変更、削除、または更新するリクエストがある場合は、register@clinicaltrials.gov。 までご連絡ください。 clinicaltrials.gov に変更が加えられるとすぐに、ウェブサイトでも自動的に更新されます。