Table 3 Intervention characteristics
Author/year/ country | Interventionist | Intervention | Outcomes | Development | Implementation | Theoretical support | |
|---|---|---|---|---|---|---|---|
Outline | Components | ||||||
A. Aho et al. (2010) [52], Aho et al. (2011a) [40], Aho et al. (2011b) [44], Nikkola et al. (2013) [42], Raitio et al. (2015) [43], Finland | Peer supporters and HCPs | - Support package at discharge after the child’s death - Peer support one week after the child’s death - Follow-up contact by HCP after 2–6 weeks | - Support package - Peer contact - HCP contact | Outcomes fathers (Aho et al. 2011a): - Experienced most affect and emotional support, more from peer supporters than from HCPs. - Most fathers responded that the follow up contact helped them in coping, timing of contact was appreciated - Lower values in all dimensions of grief except for personal growth in the intervention group Outcomes mothers: - No significant differences in grief reactions between intervention - and control group (Raitio et al. 2015) - Mothers received most affect, moderate affirmation, and little aid from HCPs and peer supporters (Nikkola et al. 2013) - Follow-up contact helped mothers in coping (Nikkola et al. 2013). Outcomes HCPs (Aho et al. 2011b) - Follow-up contact important element of care, but also stressful and difficult - Implementation possible due to positive attitude HCPs, resources inadequate - Intervention increased cooperation between HCPs and peer supporters | - Baseline study on current bereavement support systems - Systematic review - Expert panel - Clinical experience and patient perspective | - Training for implementers - Training to use the intervention was provided for peer supporters and HCP | Not mentioned |
B. Berrett-Abebe et al. (2017) [45], USA | Social worker (program coordinator) and clinician | Two years bereavement program: - Comfort basket 3–4 weeks after death - Phone call/note: 2 weeks, 1 month and 2 months after child’s death, annually on birthday and anniversary - Letters: at 3,6,10,12,18,24 months after death | - Comfort basket - Phone calls - Letters - Info sheets - (Anniversary-)cards | Identified themes: (1) Lived experience of grief; grief is intense, long-lasting, varies day by day, different for everyone. Relationships could become strained or a comforting source of support. (2) Relationships HCPs: Being treated like family, human connectedness and compassion (3) Hospital-based bereavement support: Feeling of not being forgotten by HCPs, parents appreciated talking to HCPs who were not afraid of talking about their traumatic experiences. Parents valued the content of the letter, comfort basket and materials. (4) Preferences extended bereavement care: ongoing, flexible, annual informal gathering, formalizes peers support contact | - Development by multidisciplinary working group in oncology - Based on social support theory, input from parents, and clinical knowledge | Not mentioned | Stress and coping social support theory: social support helps individuals manage stressful situations by improving coping responses |
C. Brink et al. (2016) [46], Denmark | PICU physician and nurses | 90-min follow-up meeting at the PICU, 4–8 weeks after the loss of the child: 45 min to discuss medical topics (physician and nurse) and 45 min to discuss care and dealing with everyday life (nurse) | - Follow-up meeting | Identified themes: (1) Turning back: stressful and unpleasant to return to PICU, no prior expectations, valuable to see HCPs affected by the child’s admission. (2) Framework meeting: ambience calm and oppressive or good and emotional (with focus on parents). Participation of nurses was valued, parents experienced more tenderness when the physician left. (3) Relations HCP: relationship with staff makes return to PICU good experience, eg. being recognized and mentioned by name. (4) Closure: meeting was experienced as closure of the course in the PICU | Not mentioned | Not mentioned | Not mentioned |
D. Cook et al. (2002) [53], UK | Trained counsellor and doctor | - Information letters for parents - Encouragement of families to seek support - Follow-up meetings 8–12 weeks after child’s death | - Follow-up meeting - Personalized information - Encouragement | Not applicable | Trained counsellor is available | Not mentioned | Not mentioned |
E. Darbyshire et al. (2012) [47], Australia | Designated nurse | - Information folders, containing contacts, readings and practical advice - Attending the child’s funeral - Phone calls until 13 months after death - Cards at special times such as birthday. | - Information folders - Attending the funeral - Follow-up phones calls - Sending cards | - All parents received the follow-up calls and were satisfied with the length of the follow-up program. - All parents were positive about the telephone follow-up program and valued the opportunity to share memories with someone who knew their child - Personalized cards and letters felt as an acknowledged of the important relationship with the hospital. | The intervention was based on a literature search and a focus group. | - Bereavement education and training twice a year. - Bereavement case file is created, including a photo, call plan, and copies of correspondence. | Not mentioned |
F. Edi-Osagie et al. (2005) [59], UK | Bereavement Care Team (BCT): team member that had most contact with the parents before death, or the one with the lightest case load. | Prior to death: Introducing member of BCT, counsellor, and chaplain. Offer blessing or religious ceremony and access to bereavement suite. Immediate period following death: Literature/information is provided, clothing from bereavement room nursing the baby, provide cold cot. Help planning the funeral and attend, card is sent. Provision of memory box and keepsake bag. Helps explaining the death to the siblings. 24 h telephone support available. Advice on financial matters and social benefits. Follow up: Home visit to all bereaved parents, flowers are sent after 6 weeks. Annual remembrance service. | - Blessing/religious ceremony - Bereavement suite - Memory book - Pictures - Keepsakes - Information letters - Provide cold cot - Help in arranging the funeral - Memory box and keepsake bag - Access to telephone support 24/7 - Financial advice and benefits - Follow-up visit - Flowers sent - Annual remembrance service | Not applicable | Members of bereavement care team have undertaken counselling courses, educational workshops, and workshop on how to train others. | Regular education sessions for HCPs, written guidance. | Not mentioned |
G. Eggly et al. (2011) [48], Meert et al. (2011) [49], Meert et al. (2014) [41] | Physicians of the PICU who are trained in conducting follow-up meetings. | Framework follow-up meeting: - Invitation at discharge and after one month - Card/call after one month, evaluating preferences for meeting and planning - Follow-up meeting (1 h) - After meeting: thank you note, supportive information - Debriefing for HCPs | - Follow-up meeting - Supportive materials and information - Phone call and card | - Physicians’ participation in follow-up meetings: never (33%), 1–5 meetings (31%), > 5 meetings (36%). Attendants participated more often than fellows. - Parents perceived the meeting as helpful for themselves (92%), for others (89%) and in coping with the future (78%) - Physicians stated that they adhere to the framework (75%), consider the framework easy to use (92%), beneficial for parents (92%) and for themselves (89%) | Eggly S (2011): Framework is based on the experience and perspectives of bereaved parents and paediatric intensive care unit physicians. | Physician participants were trained to use the follow-up meeting framework via face-to-face or web-based small group sessions. Training included: education on bereavement processes and the framework, simulated follow-up meetings and interactive discussions | Not mentioned |
H. Gibson et al. (2011) [60], USA | Staff of the NICU (mostly nurses and social workers), all bereavement council members. | Prior to death: professional photography, offer baptism, discuss end of life preferences After death of the child: Give teddy bear; inform about memory box and follow-up contact; provide folders and reading material. Follow-up contact: 6 fixed times, from 1 day through 1 year. Card schedule: 6 cards on special days. Twice a year a memorial service. Parents are invited the first two years after death. | - Washing/holding the child - Baptism/religious ceremonyavailability of family room - Hand−/footprints and lock of hair - Memory box (includes CD with photos, bracelets, rings, shell from baptism, any bedside belongings) - Follow-up cards (including butterfly ornament) and calls - Family support folder - Casket - Remembrance ceremony | Not applicable | Practice-based and on the personal experiences of one nurse. Several nurses and 2 social workers attended the Resolve Through Sharing (RTS) training by Bereavement Services | - Checklist in medical file - Education new employees and one-a-year education fair - Monthly council meeting | Not mentioned |
I. Levick et al.(2017) [54], USA | Neonatologist and designated staff member (primarily nurse) with support from BCT | When neonate just died: inviting loved ones, hold and bathe child, preserving infant’s bedside till parents are ready to remove it. Keepsakes even if parents are uncertain. In that case, hospital stores the keepsakes. The ability to let parent help with making keepsakes. Checklist of services that can be provided. Follow-up program: call schedule; within days, at 2-3 weeks, after three weeks adjusted to wishes parents until 12 months after death. Card schedule: standard within 2 weeks and at 11 months. Other moments adjusted to wishes of parents. | - Hold/bath child - Sympathy cards - Follow-up phone calls - Photos of the child - Hand−/foot−/head prints of the child, could be combined with hand of the parent/sibling - Sibling support program - Bereavement information folder - Certificate of life - Beaded name bracelet - Memory stone - Locket of hair - Seashell used for baptism - Bereavement gown and/or gown crafted from donated wedding dresses - Escort parents/siblings to the car - Keepsake box for siblings (storybooks, stuffed animals, memory stone, hand−/footprints | Not applicable | Literature review | - The intervention is coordinated by the NICU Bereavement Care Team (BCT). - Bereavement/keepsake checklist is used by all personnel. - BCT Nurse reports personal information and dates, and designated nurse appointed in spreadsheet. | Not mentioned |
J. Michelson et al. (2013) [50], USA | Photographer who has specific expertise in bereavement photography and training in bereavement support. | Photographer is updated on medical/ family situation of family by HCP. Taking photographs of patient and family without posing.Preparing album in documentary style and deliver album to family. | - Photograph album of patient and family in documentary style | - HCPs thought parents were grateful for photos (85%), and photos made HCPs feel better about their role (70%) and did not take too much time (85%). - Positive: impact program on families and HCPs - Barriers: funding, availability photographers, informed consent parents | Program was based on a bereavement photography program in NICU and adjusted with input from multidisciplinary group. | Education of staff members about the program through presentations at regular meetings, information provided online and individually. | Not mentioned |
K. Morris et al. (2016) [55], USA | Program coordinator, social workers and a nurse practitioner | - Newly bereaved families are mailed a bereavement packet (includes a formal condolence letter, a psycho-educational bereavement guide, a flyer outlining upcoming seminars at the hospital, and a list of online programs). - Seminars for parents about coping with grief and 8-week support group each spring. - Availability of support groups, individual counselling, telephone support, and memorial service | - Condolence letter - Memorial events - Educational guide (booklet and on website) - Seminars about coping with grief - Support group - Workshop for parents and siblings - Telephone support - Referral and resource information | Not applicable | The program is developed by parents and staff. The bereavement program was modelled on the bereavement program developed at a near cancer institute where education, guidance and support were identified as the primary constructs. | Quarterly seminars for staff, offered by the bereavement Task Force, about grief, bereaved families, and self-care for clinicians . | The psycho-educational bereavement guide “When Grief is New”, is based on cognitive behaviour theory principles. |
L. Oliver et al. (2001) [51], USA | Chaplain | - First meeting at hospital just after child’s death (religious rituals are offered, parents are provided with informational brochures) - Second meeting at funeral or the families’ home after one month - Third meeting: educational dinner with the family and 15 supporters (eg friends/family), within two months after death | - Information brochure - Information video for surviving children - Attending funeral - Home visit - Educational event with supporters | Parent Survey: - Time in hospital: staff were reported sensitive to the child and parents (90% & 93%), prepared parents for death (81%), and the treatment was understandable (90%). - Chaplain’s first visit: parents wanted a meeting, the meeting was helpful, and answered questions (80, 90, 78%). - Meeting with supports: Supporters remembered the child (91%), accepted adjustment time (89%), and called, visited, take out and wrote more (73%) - Supporters survey: The meeting helped supporters understand parents’ journey (95%), prepared to care (82%), made it likely to use advise (82%), supporters took specific actions to remember the child (69%), accepted adjustment time (94%), and called, visited, took out, wrote more (78%). Observations on the support network: 63% took actions to remember the child, 50% accepted adjustment time, 31% called, visited, took out and wrote often, and 77% reported ongoing benefit from dinner meeting. | Not mentioned | Not mentioned | Not mentioned |
M. Reilly-Smorawski et al. (2010) [56] | Two senior NICU staff nurses with backgrounds in psychology and social work | A closed, hospital-based format for couple-based support group(12 weeks): week 1–3: introductory phase week 3–11: open-format designweek 11: a qualitative evaluation tool was distributed and collected. week 12: summarizing the support group experience and for final preparation for life after the bereavement group. Leaders planned to offer to reconvene the group at intervals of 3 months for the year following the baby’s death | 12 weeks couple-based bereavement group; attending weeklyTopics for discussion: A the baby’s death and related events B personal grief experiences C couple issues including gender-related grieving and communication D the future | Not applicable | Program was based on several observations on bereaved couples. Couple-based bereavement group was part of bereavement care program. | - After each 12-week session themes of the survey were bundled, and adjustments were made where needed to improve the support group functioning. - Education of the facilitators - Attending of bereavement counselling workshops and related conferences | Not mentioned |
N. Snaman et al. (2017) [57], USA | Quality of life team, bereavement program coordinator and bereaved parent mentors | The bereavement program describes three parts: Part 1: Clinical and Supportive Interventions: - Child/family meet the QOL team and bereavement coordinator to start supportive relationship. Families receive a booklet, option for peer support. - Memorial event; two day gathering for bereaved parents whose child died 6 months to three years previously. Part 2: Parent-Created Materials: - Condolence card, several weeks to child’s death. - Bereavement resources guide is mailed within two weeks of a child’s death. - Seasons booklet & Remembrance mailings - Additional resources: books for siblings, parents videos. Part 3: Bereaved parent could be involved in education for staff and participate in research. | - Sending cards - Peer contact - Memorial day - Booklets and information folders - Video’s for parents - Contact by cards/emails | Not applicable | The program is developed by parents and staff. Bereaved parents and multidisciplinary members of the hospital comprise the Quality of Life (QOL) steering council under the guidance of an expert bereavement coordinator. | Parent mentors receive training on a variety of topics. | Not mentioned |
O. Stastny et al. (2016) [58], USA | Public health nurse | After public health nurse has received information of coroner’s investigator families are contacted by phone/ email to schedule a home visit(s). Friends and family may be invited. During the home visit(s) the main focus is to provide support, education, SIDSs referrals, resources and connect with other SIDS bereaved families | - Phone contact - Home visit (Educate, support, provide resources, connect with peers, referral) | Not applicable | Authors experience (PHN SIDS coordinator) | Not mentioned | Not mentioned |