Patient ambassador support: Experiences of the mentorship between newly diagnosed patients with acute leukaemia and their patient ambassadors

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Purpose This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. Methods A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy–Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. Results Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. Conclusion The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. Trial registration NCT03493906

Section: Discussion Of Resultsmentioning

confidence: 99%

“…Peer support may benefit not only the person being supported but also the supporter [14,15]. Peers possess an understanding and a first-hand experience of the disease and its treatment, and may provide support to a peer who is at an earlier stage of treatment or recovery [16].…”

Section: Introductionmentioning

confidence: 99%

Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study

Nørskov

Overgaard

Boesen

et al. 2020

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“…Family caregivers were primarily matched with a caregiver ambassador with a similar diagnosis or life stage, and aligned as closely as possible to their preferences, which may explain the high satisfaction and low dropout rate. Furthermore, studies show that similar age and gender are perceived less important for successful matching [ 34 ], while similar experiences and common interests help build reciprocal, trusting relationships [ 15 , 35 ]. Social comparison processes can explain the benefits of a successful match, suggesting that comparisons aid in interpreting illness encounters, health threats, and disconcerting symptoms [ 36 , 37 ].…”

Section: Discussionmentioning

confidence: 99%

“…Social comparison processes can explain the benefits of a successful match, suggesting that comparisons aid in interpreting illness encounters, health threats, and disconcerting symptoms [ 36 , 37 ]. Previous peer support studies in cancer patients highlight that social comparison positively impacts patients’ understanding of their current situation and expectations, as well as reassures newly diagnosed patients [ 14 , 15 ]. However, if experiences are too dissimilar, there is the risk of alienation and poorer perceived support [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

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Family caregiver ambassador support for caregivers of patients with newly diagnosed hematological cancer: a feasibility study

Nielsen

Piil

Tolver

et al. 2022

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Purpose This study investigated the feasibility of a one-on-one peer support intervention in family caregivers of newly diagnosed patients with a hematological cancer during initial treatment. Methods The study was a one-arm feasibility study including family caregivers of newly diagnosed patients with hematological cancer ( n = 26) and caregiver ambassadors who were family caregivers of previously treated patients as peer supporters ( n = 17). The one-on-one peer support intervention consisted of three components: a caregiver ambassador preparatory course; 12 weeks of one-on-one peer support, and caregiver ambassador network meetings. Results Family caregivers reported high satisfaction with the delivery and flexibility of one-on-one peer support and improved in most psychosocial outcomes over time. Telephone and text messages were the most used form of contact between the peers. Caregiver ambassadors reported high satisfaction with the preparatory course and used the available support from the network meetings. No adverse events were reported. Conclusion One-on-one peer support provided by a caregiver ambassador is feasible and safe in family caregivers of newly diagnosed hematological cancer patients during their initial treatment. Utilizing volunteer caregiver ambassadors has the potential to be a new support model in family caregivers of hematological cancer patients across diagnostic groups within a clinical setting. Clinical trial registration number NCT04039100, July 29, 2019.

Evaluation of centers for information and support combining formal and informal care for patients with cancer: a systematic review of the literature

Driessen

Kranenburg

Rijt

et al. 2022

Purpose Clear information and supportive care are necessary for patients with cancer to effectively manage their condition. Traditionally, healthcare professionals offer information and support via the so-called formal care route. In addition, research has found favorable effects of informal care provided by volunteer programs and informal “walk-in support centers.” Less research has been done on initiatives that combine formal and complementary informal supportive care for patients with cancer. This systematic literature study aimed to discover (1) which types of initiatives are described in the literature, (2) what type of care they offer, and (3). how they are evaluated in terms of outcome measures. Methods We performed a systematic literature search of MEDLINE, Embase, PsycINFO, and CINAHL. Studies were included if the collaboration between one type of formal care together with one type of informal care was explicitly mentioned in the article. The search was not restricted to a specific cancer type. Results A total of 4869 records were retrieved and 18 studies were included. In most studies, the care provided consisted of emotional support for, and/or providing information to, patients and their families. Initiatives were evaluated with interviews and questionnaires. Patients with cancer reported that they were satisfied with the care offered, including information, social and emotional support, help with activities of daily living, and family-related issues. Volunteers reported that visits they made were experienced positive and rewarding and the volunteers were confident about their contribution to general healthcare. Some negative experiences were reported by volunteers, e.g., interference of their own cancer diagnosis with volunteer work. The importance of proper training was stressed. Conclusions Initiatives combining formal and informal supportive care hold the potential of added value in terms of providing emotional support for, and providing information to, patients with cancer. Support and specific training for volunteers can be viewed as success factors in the involvement of volunteers in formal care practices.