Table 2.
Intervention components.
| Year | First author | Description | Duration | Mode of delivery | Practical needs | Personal growth | Community capacity | ||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Physical, psychological, spiritual | Education | Social Support | Knowledge, skills, and attitudes about death and dying | Personal reflection and confidence | Developing community activists | Embedding sustainable change | |||||
| Interventions focused on people at the end of life (n = 3) | |||||||||||
| 2014 | Hanson | Peer-support model designed around pre-existing social networks aimed at extending practical, emotional, and spiritual support | Varied based on patients' needs, up to 2 months | In-person, via phone | Errands, household tasks, personal care, prayer, help organizing paperwork/ records/bills | Resources for help with pain relief, cancer treatment options and life-sustaining treatment | Emails, calls, cards, visits/calls with family members, help finding community resources | Support team model built on pre-existing social networks, often training natural helpers within communities | Support teams have been operating in both intervention locations >1 year after the end of grant funding | ||
| 2009 | Steinhauser | Semi-structured discussion about life story, regrets, heritage, and legacy with the intent of improving QoL | 3 weekly sessions, 45 min each | In-person | Spiritual ideas addressed in “Forgiveness” interview e.g., “Are you at peace?” | Attitudes toward death addressed in “Forgiveness”, “Heritage and legacy” interviews | All three interviews were reflective around themes of life story, forgiveness, heritage and legacy | ||||
| 2016 | Walshe | Trained volunteers provided tailored support including befriending, practical support and signposting to services | 4 weeks | In-person | Practical support and resource signposting | Befriending | |||||
| Carer-focused interventions (n = 10) | |||||||||||
| 2022 | Dionne-Odom | Coaching family carer to enhance their decision support skills and how to support patient in decision-making process | 1–5 weeks, sessions lasted 20–30 minutes | In-person, via phone | Decision making and communication training | Training for how to complete advance directives and POA | Communication training for how to discuss death and dying with loved ones | ||||
| 2017 | Grande | “Carer Support Needs Assessment Tool” which enables end-of-life needs to be identified/prioritized in partnership with the patient | Two 2-h sessions over 2 weeks | In-person | Psychological support, respite care, resource identification | Training for self-care, how to manage meds and symptoms | Training for how to ask for help from others | ||||
| 2011 | Greene | Community network facilitators assessed carers needs, helped mobilize their existing support networks, and connected them to available resources when needed | At least 3 monthly sessions | In-person | Psychological support, carer needs assessment, respite care | Carer role training, relaxation techniques | Training for how to ask for help from others | ||||
| 2011 | Henricksson | Group support program for family members of the dying with educational sessions | 6 weeks | In-person | Educational offerings chosen by group members | Peer support | Group sessions focused on how to live with someone who is dying, and the practicalities of death | Group members were encouraged to share experiences and gain insight from others | Group members felt empowered to continue helping peers | ||
| 2015 | Luker | Informational booklet including causes of common patient symptoms, end-of-life considerations, and resources | n/a | Paper leaflet | Psychological and emotional support resources | Symptom management education | Leaflet includes information about death and bereavement | Leaflet is publicly available in perpetuity | |||
| 2022 | Parker Oliver | Online (via Facebook) support groups to educate and provide social support for family carers | 4-weeks of content, in group until patient dies | Online | Weeks 1 and 2 provided links to educational material on Hospices and Pain | Peer support from other group members | Week 4 addressed topic of “Dying Process”, provided information and group shared perspectives | Each week included reflective practice on topic | Individuals can remain in the group as long as they wish, until their care recipient dies | ||
| 2011 | Williams | Government benefits scheme providing financial support and allowing full-time workers to take leave to care for dying loved one | 6 weeks | n/a | Monetary aid (6 weeks of income support up to 55% of regular earnings) | ||||||
| 2008 | Ryan | Non-clinical interventionists provided information (care options, accessing resources), emotional support, practical support (form filling, financial/benefit advice) and referral to other agencies | From diagnosis to patient death | In-person, via phone | Offered emotional support and practical (form filling, benefit advice) | Provided information on care options and accessing resources | Check in visits/calls and referral to other agencies | ||||
| 2021 | Wang | Carers interacted with an app containing modules related to self-care, caregiving role, exercise videos, and community resources | n/a | Online (in app) | Curriculum included exercise videos, breathing/relaxation techniques and spiritual care | Education on medication management, resource signposting | Reflection on caregivers' roles and boundaries, diet, exercise, sleep | App currently being reconfigured to address carer feedback | |||
| 2004 | Witkowski | Non-clinical interventionists facilitated peer support groups with carers of advanced cancer patients on topics chosen by carers | 5 sessions | In-person | Discussions on psychological reaction to cancer diagnosis in patients and carers | Education on cancer prognosis and treatment options, | Discussion on “living with cancer diagnosis” in group format with coping theories | One group chose to continue meeting as a self-help group after programme completion | |||
| Dyadic interventions (n = 5) | |||||||||||
| 2014 | Allen | Retired senior volunteers delivered a reminiscence activity intervention aimed at alleviating patient and carer distress | 3 sessions | In-person | “Feelings checks” conducted in in-person meetings | “Problem solving” skills addressed in dyad manual | Dyads given reflective manual to complete. During sessions interventionalist discussed feelings evoked from the task | Some dyads expressed the intentional of continuing to work on their projects | |||
| 2022 | Chen | Nursing students led patients and families through experience-based interviews. Participants completed online modules asynchronously | 8 sessions over 4 weeks | Online (in app) | “Mind space” module enabled patient expression of emotions. | Health education included in both control/intervention group | “Connecting You and Me” module allowed dyad discussion of their journey and expression of attitudes toward death, with facilitator | Guided reflection based on cancer experience, adulthood, childhood, adolescence and life summary | E-legacy module enabled patients to hand down wishes to others | ||
| 2014 | DuBenske | Dyads received a web-based lung cancer information, communication and coaching intervention | 24 months | Online | CHESS website facilitated CBT principles to identify emotional distress and offered coping techniques | CHESS website provided ready and organized access to educational information, resources, news | Monitored discussion groups offering social support. Separate groups for patients, carers and bereaved carers | CHESS website facilitated one-to-one question and answer service with clinician | Aspects of CHESS encourage reflection on goals, obstacles and offer techniques to overcome | Web-based platform is a resource that can be used indefinitely | |
| 2011 | Jack | Community volunteers trained in palliative care, HIV and cancer, basic nursing tasks and communication, provided tailored care to dyads, including, physical care, practical help, emotional support, and education | Not discussed | In-person, via phone | Physical care provided in management of illness, administration of medicine and cooking. Spiritual support and basic counseling offered to patient/family. | Dyads educated in areas of nutrition, hygiene, infection control and medicine concordance. | Dyad needs identified and referred to appropriate support groups | Stigma around HIV/AIDS addressed, carers trained and supported by volunteers in caring | Talks given within local communities | Programme is still ongoing | |
| 2017 | Pesut | Trained volunteer navigators provided psychosocial support for dyads and helped connect them to available resources | 1 year | In-person, via phone | Volunteers aided clients to identify and access services and resource | Volunteers helped with decision making via discussions of options and education, to empower clients to make their own decision regarding their care | Volunteers visited clients if admitted to hospital/care home, engaged in client hobbies and seniors group activity planning | Discussions about advance care planning and resources available | Strategies to improve client confidence in voicing healthcare related concerns such as via letter writing | Volunteers advocated for their clients at a community level to ensure they received all support available | N-CARE currently being scaled up and delivered across rural communities in Canada |
meds, medications; POA, power of attorney.