A Telephone Support Group for Parents of Children Discharged after Hematopoeitic Stem Cell Transplant

Topic Significance & Study Purpose/Background/Rationale 

Hematopoietic stem cell transplantation (HSCT) is a treatment option for many children with childhood cancers and nonmalignant diseases.   Providing both the physical and emotional care to their child at home, parents are frequently overwhelmed and experience significant stress following discharge from the hospital. Usual support often includes home care services, written discharge information, outpatient clinic visits and ongoing phone communication with clinicians.  Traditional support groups are not utilized since parents are often reluctant to leave their child and may need to travel great distances to attend meetings.  

Parent telephone support groups (TSG) using group conference calls have been successfully piloted.  During the project development phase, three eight week TSG were held. A total of 24 parents were asked to join a group. Based on the overwhelming positive response by both parents and health care team, a research study formally evaluated the effectiveness of the parent TSG. 

Methods, Intervention, & Analysis 

Two additional eight-week TSG sessions were conducted with 16 parent participatants.  Each one-hour session was audio-recorded and later analyzed for content and themes.  Sessions was co-facilitated by the transplant clinical nurse specialist and social worker with occasional guest presenters.  A maximum of eight parents participate in the weekly TSG for each session.  Data were analyzed for each of the eight-week sessions and compared between groups for content and themes.

Findings & Interpretation 

A wide-range of discussion topics included; isolation, medication administration/adherence, nutrition, interpreting tests/labs, adjusting to life at home, self-care and caregiver challenges.  Four main themes were identified including caregiver and family issues, skill development and following guidelines/rules. Recurrent topics focused on ongoing fear, isolation, overwhelming stress, fatigue and sleep deprivation with global issues of self-efficacy and accommodation-adaptation emerging.

Discussion & Implications

The telephone support groups provided the emotional and educational support that parents needed following discharge. Issues were openly discussed in a supportive structured format.  This innovative approach of ongoing support to parents facilitated problem-solving, anticipatory guidance and processing of experiences and feelings. Based on this evidence based research, there is a need to promote telephone support groups which can lead to improved symptom management and better parental support during this difficult period post transplant.