Adolescent Loss: The Impact of Loss on Adolescent Oncology Patients
Condition: Adolescent Oncology Patients
MeSH terms: Neoplasms
Study type: Observational

Summary: 
      Teen loss is not uncommon. Depression, emptiness, disbelief, hopelessness, and guilt are
      typical responses. How teens with cancer cope with the loss of a loved one or a close friend
      has not been well-studied in the bereavement or oncology literature. This study will describe
      the impact of loss on teen patients who are on treatment or have recently completed treatment
      for malignancy. We will look at baseline personality traits and ask teens to identify losses
      in their life. We will ask questions about coping and meaning-making after loss. A parent
      will be invited to participate -to measure parental awareness of teen loss and determine if
      parental coping affects teen coping. The inventories have been validated by other
      researchers.
    

Detailed description: 
      All participants will asked to complete a bereavement questionnaire quantifying the losses
      they have experienced. All participants will be screened for depression/anxiety as well as
      life outlook using validated tools. Patients who identify that they have experienced the loss
      of someone significant in their life on the bereavement questionnaire will continue with the
      study and complete a battery of validated psychological inventories. They will be asked to
      identify their most significant loss in regards to completion of the remainder of the
      questionnaire. In addition, those who identify losing a friend to cancer will be invited to
      participate in a 30-45 minute semi-structured interview (in person or via telephone) during a
      second session with the study staff. This interview will be audiotaped, to allow for
      transcription and analysis later. Parents will complete demographic information, the
      bereavement questionnaire, and complete inventories of family coping / cohesion regardless of
      child's responses to bereavement questionnaire.

      In addition, those who identify losing a friend to cancer will be invited to participate in a
      30-45 minute semi-structured interview (in person or via telephone) during a second session
      with the study staff.

      Primary Objectives:

        -  Estimate the prevalence of loss, with particular interest in the extent of peer loss, in
           adolescent oncology patients who have been on therapy ≥ 12 months (≥ 6 months if
           progressive or refractory disease) or off therapy for ≤ 3 years.

        -  Describe the impact of loss on adolescent oncology patients by focusing on coping
           efficacy, psychological distress, meaning-making, and complicated bereavement.

      Secondary Objective:

        -  Describe parental knowledge of losses experienced by an adolescent child who has
           recently undergone therapy.
    

Observational model: Case-Only
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        English-speaking adolescent oncology patients (age 13-21) at St. Jude Children's Research
        Hospital who have been on therapy for ≥ 12 months (≥ 6 months if progressive or refractory
        disease) OR off therapy for ≤ 3 years.
      
Keywords: adolescent; bereavement; cancer; coping skills