Communication and Hospice Online With Optimal Support and Engagement

The PROMIS Physical Well Being Domain measures mobility and ability to perform daily activities and is taken from the PROMIS Scale v1.2 Global Health. The domain contains four-items ranked on various Likert scales. One-items addressing general physical health is ranked on a 5-point Likert Scale from 5-Excellent to 1-Poor. One item addressing physical activities is ranked on a 5-point Likert scale from 5-Completely to 1-Not all. One item addressing fatigue is ranked on a 5-point Likert scale from 5-None to 1-Very Severe. One item addressing pain on average is ranked from a scale from 0-no pain to 10-worst pain imaginable. Scores range from 0-50 with higher the score indicates higher physical function.

The PROMIS Mental Well Being score is taken from four-times on the PROMIS Scale v1.2 Global Health. The 4 item sub-scale are administered using 5-point Likert Scale. Three items are ranked on a 5-point Likert Scale from 5-Excellent to 1-Poor. One item addressing emotional problems is ranked on a 5-point Likert scale from 5-Never to 1-Always. Scores range from 0-50 and generally the higher the score indicates greater mental well-being.

The UCLA Loneliness Scale-3 is a 3-item scale that assesses loneliness. Each item is assessed by a 3-point Likert scale as follows: 1-Hardly ever, 2-Some of the time, and 3-Often. Scores range from 3-9, with the lower the scores indicating less loneliness.

The Zarit Burden-7 is a 7-item interview used to measure strain in family and informal caregivers. Each item is ranked using a 5-point Likert scale from 0 (Never) to 4 (Nearly Always). Total score ranges from 0-42. Generally, higher scores indicate a higher level of burden.

The CQLI-R contains four-items ranking physical, financial, emotional, and social quality of life. Each item is ranked from 0 to 10 by the caregiver with 0 representing lowest quality of life and 10 representing highest quality of life. Total scores range from 0 to 40 with lower scores indicating lower quality of life to higher scores indicating higher quality of life.

The ISEL-SF measures perceived social support. The domain contains 12-items with four subscales. Each item is ranked on a 4-point scale as follows: 3-definitely accurate, 2-probably true, 1-probably false, and 0-false). Total scores range from 0 to 48 with higher scores indicating higher levels of perceived social support.

The OSS is a 40-item measure assessing the perception of how well social support needs are met with the online group. Items are scores with a 5-point Likert scale as follows: 0 = never, 1 = rarely, 2 = sometimes, 3 = pretty often, 4 = alot. Total score range from 0-160. Higher scores indicate more social support.

The GIS is 4-item scale that measures the expression of shared identity within the online support group. Each question is ranked according to a 7-point Likert scale from 1= strongly disagree to 7 = strongly agree. Final score is the average of the four questions and ranges from 0-7. The higher the score indicates a higher sense of shared identity.

The SDPI is a 17-item scale that measures feelings of disconnectedness and isolation. The SDPI has two subscales: Social Disconnectedness Scale and Perceived Isolation Scale.

The Social Disconnectedness Scale contains 8-items and measures physical ties. Items include contact frequency and self-reported numbers. All items are scored by taking an average. Scores have generally ranged from -1.30 to 2.34 with lower scores indicated more connectedness and higher scores indicating more disconnectedness.

The SDPI is a 17-item scale that measures feelings of disconnectedness and isolation. The SDPI has two subscales: Social Disconnectedness Scale and Perceived Isolation Scale.

The Perceived Isolation Scale includes 9-items that measure loneliness and social support. Six-items assesses social support and are ranked on a 3- or 4-point Likert scale. Three-items are included from the UCLA Loneliness Scale assessed by a 3-point Likert scale as follows: 1-Hardly ever, 2-Some of the time, and 3-Often.

Higher overall final scores indicate greater intensity of perceived isolation.

The Facebook intensity scale is an 8-item scale that measures active Facebook use and emotional connection to Facebook and integration of Facebook into daily life. Two questions assess number of Facebook friends and time spent on Facebook. Six of the eight questions use a 5-point Likert scale ranked from 1-5 (1= strongly disagree to 5 = strongly agree). The higher the score indicates the participant's engagement and usage of Facebook is greater.

Threads refer to the communication posts within online support groups and thread sequences are scenarios to coordinate communication. Thread sequences are categorized as indirect or direct strategies. A direct strategy is categorized as an initial post to open discussion by the facilitator. Indirect strategy is categorized as a reply to a facilitator to invite further discussion. There are four direct and four indirect sequence scenarios for a total of eight scenarios to analyze family caregivers' response and interaction.

Thread sequences will be reported for indirect and direct thread sequences.

The Safety Question Questionnaire is a 2-question survey to assess the perception of safe communication in the online support group. The survey uses a 6-point Likert scale ranked from 0-5 (0=disagree and 5=strongly agree). Total score range from 0-10. Generally, the higher the score indicates a higher perception of safety.