| Literature DB >> 35200598 |
Jacqueline L Bender1,2,3,4, Natasha Puri1, Sarah Salih1, Norma M D'Agostino2, Argerie Tsimicalis5, A Fuchsia Howard6, Sheila N Garland7, Karine Chalifour8, Emily K Drake9, Anthony Marrato1, Nikki L McKean1, Abha A Gupta2,10.
Abstract
Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.Entities:
Keywords: adolescents and young adults; cancer; digital health; navigation; peer support
Mesh:
Year: 2022 PMID: 35200598 PMCID: PMC8870696 DOI: 10.3390/curroncol29020099
Source DB: PubMed Journal: Curr Oncol ISSN: 1198-0052 Impact factor: 3.677
Participant characteristics.
| Characteristic | Category | Count (%), Unless Otherwise Specified |
|---|---|---|
| Age (years), mean (SD), ( | 31.3 (6.3) | |
| Age at Diagnosis (years), mean (SD), ( | 28.0 (6.8) | |
| Time Since Diagnosis (years), mean (SD), ( | 3.3 (3.8) | |
| Cancer Type ( | Breast | 91 (21.7) |
| Hodgkin’s Lymphoma | 47 (11.2) | |
| Testicular | 41 (9.8) | |
| Leukemia | 36 (8.6) | |
| Sarcoma | 35 (8.4) | |
| Thyroid | 32 (7.6) | |
| Gastrointestinal, colorectal, liver | 31 (7.4) | |
| Gynecological (Cervical, ovarian, uterine) | 27 (6.4) | |
| Non-Hodgkin’s Lymphoma | 25 (6.0) | |
| Other | 54 (12.9) | |
| Treatment Types ( | Chemotherapy | 311 (74.2) |
| Hormone | 70 (16.7) | |
| Radiation | 175 (41.8) | |
| Surgery | 254 (60.6) | |
| Bone Marrow Transplant | 22 (5.3) | |
| Other | 51 (12.2) | |
| Gender ( | Woman | 218 (65.1) |
| Man | 117 (34.7) | |
| Transgender | 0 (0) | |
| Prefer not to answer | 2 (0.6) | |
| Sexual Orientation ( | Heterosexual | 286 (85.4) |
| Homosexual/Bisexual/Other | 41 (12.3) | |
| Prefer not to answer | 8 (2.4) | |
| Country of Birth ( | Canada | 251 (74.5) |
| Other | 86 (25.5) | |
| Race/Ethnicity ( | White | 212 (63.1) |
| Not White/Not Indigenous | 111 (34.5) | |
| Indigenous | 13 (3.9) | |
| Province where you currently live ( | Newfoundland | 6 (1.8) |
| Nova Scotia | 6 (1.8) | |
| Quebec | 11 (3.3) | |
| Ontario | 274 (81.3) | |
| Manitoba | 11 (4.2) | |
| Saskatchewan | 1 (0.3) | |
| Alberta | 13 (2.7) | |
| British Columbia | 9 (2.7) | |
| Northwest Territories | 1 (0.3) | |
| I do not currently live in Canada | 2 (0.6) | |
| Size of setting where you currently live ( | Urban or suburban (e.g., city) | 292 (86.9) |
| Town or rural (e.g., country) | 44 (13.1) | |
| Current school or employment status ( | Employed and/or Student | 272 (80.5) |
| Unemployed | 66 (19.5) | |
| Highest level of education ( | Completed/Some University * | 216 (63.5) |
| Completed/Some College * | 84 (23.7) | |
| High school or less | 28 (8.9) | |
| Personal income ( | Less than CAD 40,000 or no income/ not working | 161 (47.9) |
| CAD 40,000 to less than CAD 80,000 | 87 (25.9) | |
| CAD 80,000 or more | 49 (14.6) | |
| Prefer not to answer | 38 (11.3) | |
* In Canada, colleges offer Diploma and Certificate programs, while universities offer Bachelor, Master’s, and Doctoral degrees.
Needs and preferences for peer support.
| Characteristic ( | Category | Count (%) |
|---|---|---|
| Desire to connect with other AYA ( | Yes | 291 (76.6) |
| Talked to a medical professional regarding peer support ( | Yes, a medical professional initiated the conversion | 191 (50.0) |
| Yes, I initiated the conversation | 46 (12.0) | |
| No | 145 (38.0) | |
| Received a referral to a peer support program ( | Yes | 143 (37.3) |
| Methods used to connect with other AYA ( | Social media | 152 (40.1) |
| Cancer organizations | 117 (30.9) | |
| In-person support groups | 85 (22.4) | |
| Camps, retreats, and adventure groups | 67 (17.7) | |
| Online discussion forums | 51 (13.5) | |
| Healthcare professional | 50 (13.2) | |
| Conference | 50 (13.2) | |
| Telephone support service | 21 (5.5) | |
| Digital apps | 12 (3.2) | |
| Can you count on another AYA to (fill in with your answer) | ||
| Provide you with good information or advice regarding a problem? ( | I would like/or I would like more of this type of peer support | 159 (42.7) |
| I have this type of support | 95 (25.5) | |
| Not needed | 118 (31.7) | |
| Provide you with emotional support? ( | I would like/or I would like more of this type of peer support | 168 (45.2) |
| I have this type of support | 85 (22.8) | |
| Not needed | 119 (32.0) | |
| Provide you with practical help with things, such as daily chores, child care or getting to appointments? ( | I would like/or I would like more of this type of peer support | 105 (28.5) |
| I have this type of peer support | 22 (6.0) | |
| Not needed | 241 (65.5) | |
| Hang out with and perform normal social things? ( | I would like/or I would like more of this type of peer support | 161 (43.6) |
| I have this type of peer support | 71 (19.2) | |
| Not needed | 138 (37.3) | |
| Satisfaction with peer support received from other AYA ( | Very Satisfied/Satisfied | 139 (36.7) |
| Neutral | 49 (12.9) | |
| Very Dissatisfied/Dissatisfied | 10 (2.6) | |
| N/A, I have not received support from other AYA | 181 (47.8) |
Barriers to accessing peer support.
| Frequency | Variable ( | Count (%) |
|---|---|---|
| 1 | In-person support programs were not convenient to attend ( | 284 (76.1) |
| 2 | Finding another AYA who I can relate to was difficult for me ( | 268 (72.4) |
| 3 | AYA specific in-person support programs were hard to find ( | 261 (70.4) |
| 4 | Unsure of where or how to find other AYA ( | 257 (68.9) |
| 5 | Uncomfortable attending in-person support programs ( | 247 (66.12) |
| 6 | Concerned about presence around negative minded cancer patients ( | 223 (59.9) |
| 7 | Concerned about getting close to someone who might die ( | 214 (57.8) |
| 8 | Concerned about hearing emotionally difficult stories ( | 208 (56.1) |
| 9 | Discussing my health condition on social media worries me due to privacy ( | 202 (54.2) |
| 10 | Desire to reconnect with healthy peers and not other cancer patients ( | 146 (39.7) |
| 11 | Using social media is difficult for me ( | 31 (8.3) |
| 12 | Access to a computer or mobile device is difficult for me ( | 24 (6.5) |
| 13 | Using a computer or mobile device is difficult for me ( | 15 (4.0) |
Participants were asked to rate the extent to which these variables were barriers on a 4-point Likert scale (1 = no problem, 2 = not sure, 3 = somewhat of a problem, 4 = big problem). Responses were dichotomized as no barrier vs. not sure, somewhat, big barrier.
Interest and preferences for digital peer navigation.
| Variable ( | Category | Count (%) |
|---|---|---|
| Interest in being connected with a peer navigator ( | Yes | 186 (48.9) |
| If no: ( | ||
| I do not think I need support | 82 (42.1) | |
| I do not like to talk about my problems | 21 (10.8) | |
| I believe I have adequate support | 88 (45.1) | |
| Other | 27 (13.8) | |
| Interest in being a peer navigator ( | Yes | 231 (62.9) |
| Importance of training for the peer navigator role? ( | Yes (slight to very important) | 257 (67.8) |
| No | 86 (22.7) | |
| Unsure | 36 (9.5) | |
| Willingness to attend an online peer navigator training program ( | Yes | 231 (63.1) |
| Interest in using a digital app to connect with a peer navigator ( | Yes | 310 (82.0) |
| Digital app communication methods ( | One-on-one | 259 (72.3) |
| In a group | 242 (67.6) | |
| Types of support desired from a peer navigator? ( | Emotional support | 329 (90.1) |
| Information support | 326 (89.1) | |
| Social companionship | 284 (78.0) | |
| Practical support | 269 (73.6) | |
| Best time to connect with a peer navigator ( | During diagnosis | 250 (67.9) |
| Before treatment | 248 (67.4) | |
| During treatment | 295 (80.2) | |
| After treatment | 256 (69.6) | |
| If cancer recurs or spreads | 253 (68.8) |
Peer matching characteristics.
| Rank | Matching Characteristics ( | Count (%) |
|---|---|---|
| 1 | Type of cancer ( | 329 (88.4) |
| 2 | Specific concerns (e.g., side effects, return to work) ( | 317 (86.1) |
| 3 | Age at diagnosis ( | 316 (86.1) |
| 4 | Treatments received/considering ( | 314 (85.1) |
| 5 | Current age ( | 302 (82.1) |
| 6 | Stage of disease ( | 278 (75.7) |
| 7 | Coping style ( | 268 (73.0) |
| 8 | Personality style ( | 237 (64.4) |
| 9 | Geographic region where you live ( | 229 (62.7) |
| 10 | Hobbies/interests ( | 191 (52.5) |
| 11 | Gender ( | 167 (45.5) |
| 12 | Hospital where you were treated ( | 144 (39.1) |
| 13 | Religion/spirituality ( | 132 (37.0) |
| 14 | Relationship status (e.g., single, married) ( | 122 (33.2) |
| 15 | Education ( | 115 (31.3) |
| 16 | Sexual orientation ( | 63 (17.2) |
| 17 | Race/ethnicity ( | 29 (7.9) |
* Participants were asked to rate the extent to which these variables were important matching characteristics on a 4-point Likert scale (1 = not at all important, 2 = not sure, 3 = somewhat important, 4 = very important). Responses were dichotomized as not important vs. not sure, somewhat important, very important.