Table 2.
Reference | Description of intervention | Process of development |
---|---|---|
RCTs | ||
Arden-Close et al.
60
102 women at all stages of ovarian cancer (>50% at Stage III or IV) and their partners recruited via ovarian cancer charity UK |
Expressive writing (for couples)—based on Guided Disclosure Protocol (GDP)—instructions sent by post, and participant telephoned at designated time to instruct them to start writing, and again 15 min later telling them to stop Where: At home Dose: 15 min per day over 3 days within the same week (preferably consecutively). Patients and partners could write at the same or different times Topic: Patient’s diagnosis and treatment. Day 1: chronological description of event; Day 2: thoughts and feelings at the time of the event; Day 3: how they currently think and feel about the event, and reflections on future coping with a similar event. Who: Single researcher |
The intervention was based on GDP, a protocol developed by Duncan and Gidron
85
based on the cognitive processing hypothesis of trauma and tested in rheumatoid arthritis
86
and fibromyalgia.
87
Consultation with stakeholders not reported. |
Averill et al.
33
33 males and 15 females with amyotrophic lateral sclerosis (ALS) likely to survive for at least 6 months with good psychological health recruited via ALS registries US |
Written or spoken emotional disclosure—provided with written instructions for how to complete the exercise, suggestions (e.g. find a quiet place where you can write undisturbed) and paper on which to write and asked to either write (N = 10) or talk into a tape recorder (N = 8) Where: At home Dose: 20 min per day for 3 days over the period of a week Topic: Deepest feelings and thoughts related to their experience with ALS Who: Research nurse |
The development process was not reported; a range of EW interventions were cited in background (e.g. 16,61,87–89). Consultation with stakeholders not reported. |
Bruera et al.
66
15 females and 9 males with advanced gynecological and prostate cancer referred to palliative care or inpatient unit US |
Expressive writing—typed or handwritten Where: Remote (via phone call) but exact location not reported Dose: 20-min writing sessions, twice per week, for 2 weeks Topic: Their most upsetting experiences, important things about which they had the deepest feelings and thoughts about their cancer, and an event or experience that they had not talked about with others in detail Who: Research nurse |
The development process was not reported; cited EW interventions in the background.
61
Consultation with stakeholders not reported. |
De Moor et al.
61
36 males and 6 females with metastatic Stage IV Renal Cell Carcinoma recruited from a Phase II tumor vaccine trial with life expectancy more than 4 months US |
Expressive writing
Where: At each of the first four clinic visits while the patients waited to receive their vaccine treatment. Dose: 20 min session once a week for 4 weeks (first four clinic visits as part of trial) Topic: To write their deepest thoughts and feelings about their cancer. Specific prompts varied slightly from one session to the next but remained essentially the same. Who: Not reported |
Writing exercises followed the model developed by Pennebaker and Beall.
16
Consultation with stakeholders not reported. |
Imrie and Troop
13
8 females and 5 males with life-limiting illness or secondary cancer recruited from a Day Hospice UK |
Compassion-focussed expressive writing (CFEW) compared to expressive writing about stress without compassion instruction (control) Where: In a quiet room in the Day Hospice, at the same time as 1–6 other participants Dose: Two 20-min sessions, 1 week apart Topic: • Control condition—something they found stressful in the last week • Experimental condition—Stress + self-compassion—10 min writing on the stressful event, 10 writing with compassion to the self Who: Not reported |
Stakeholders involved in development: Day Hospice management informed the study design including the spacing of the writing sessions, the writing instructions, the support provided (e.g. pastoral support, informing care staff) and the measures used. This is the reason behind control group task (stress-only): the team felt writing about a neutral topic would be inappropriate. |
Lloyd Williams et al.
64
68 females and 32 males with advanced metastatic cancer (range of primary sites) at the end stage of their diseases recruited from hospice day units. UK |
Focussed narrative interview. A random selection were audio-recorded. Where: Not reported Dose: One off interview delivered at randomization or a few days later if requested. Length of interview not reported. Topic: Reflection on sense of meaning, wellbeing and suffering, what they believe to be the main cause of their suffering and any resources they use or professional care provided to maintain their wellbeing. Emphasis on allowing patients to “tell their story.” Who: Researcher delivers; training not reported but discussion notes intervention could be delivered by healthcare professionals with “training and supervision” |
Narrative therapy, dignity therapy, and supportive-expressive group therapy cited as background.90–93
Consultation with stakeholders not reported. |
Lloyd Williams et al.
35
39 females and 18 males with advanced cancer receiving palliative care from a hospice day care service with a prognosis between 6 weeks and 12 months, with clinical depression UK |
Focussed narrative semi-structured interview. A random selection were audio-recorded. Where: In hospice or patient’s home Dose: One off 25–60 min interview delivered within one week of randomization Topic: Sense of meaning regarding distress/depression and physical, psychological and spiritual well-being; what they felt had been the main factor contributing to depression/distress, the resources they had employed, and any medical/professional care received. Emphasis on reflection on inner resources and coping methods. Who: Trained researchers with a health background and experience in research with patients with advanced illness |
Developed from literature reviews, expert clinician consensus, and pilot work. Drew on Medical Research Council (MRC) framework for the development and evaluation of complex interventions. 26 |
Low et al.
58
62 women with stage IV metastatic breast cancer receiving any form of treatment, recruited from larger study from oncology clinics, community practices, and online mBC website US |
Expressive writing—After receiving the written materials, participants call the research office to schedule writing sessions. A trained research assistant telephones the woman at the start of each writing session to read the instructions to the participant, then calls again 20 min later to ask the participant to stop writing. Where: At home Dose: Four 20-min sessions within a 3-week interval at participant’s convenience Topic: Writing about cancer-related emotions Who: Trained research assistant |
Instructions were adapted from Pennebaker and Beall
16
and Stanton et al.
94
The research assistant telephone procedure was based on a protocol followed in previous expressive writing research with cancer patients and loved ones.95,96
Consultation with stakeholders not reported. |
Manne et al.
59
253 women with gynecological cancer (>50% advanced) recruited from cancer centers and hospitals US |
Spoken disclosure in Supportive Counselling—therapist using active but non-directive and non-interpretive techniques to facilitate emotional expression Where—At the oncology offices of the study site Dose—6 h-long sessions and a phone booster session 1 week after final session Topic—Reactions to their cancer Who—Trained social workers or psychologists with 5–15 years therapy experience |
Components of the Supportive Counselling intervention included those commonly used in Supportive Counselling and Emotion-Focused Therapy techniques. Consultation with stakeholders not reported. |
Manne et al.
75
; Manne et al.
76
; Virtue et al.
77
; Virtue et al.
80
252 women with gynecological cancer (>50% advanced) recruited from cancer centers and hospitals US |
Spoken disclosure in supportive counselling—as per Manne et al.
59
but “bolstered by training therapists to facilitate expression of emotional reactions and understanding them” and an additional session Where—At the oncology offices of the study site Dose—Seven hour-long sessions and a phone booster session 2–3 weeks after final session Topic—Experiences with and reactions to their cancer Who—Trained social workers, master-level or doctoral-level psychologists, or psychiatrists who were practicing in the community or employees of each cancer centre with between one and 34 years of therapy experience |
Components drawn from supportive counselling and emotion-focused therapy, intervention based on SC in Manne et al.
59
but with adaptations to facilitate emotional expression. Consultation with stakeholders not reported. |
Milbury et al.
68,74
38 females and 37 males with metastatic lung cancer (and their partners) recruited from a cancer centre US |
Online couple-based meditation with spoken emotional disclosure
Where—Session 1 is completed face-to-face or online via videoconferences depending on the participants’ availability. Sessions 2–4 are delivered via videoconferencing Dose—4 h long sessions over 4 weeks. Additional home materials (CDs, printed materials, exercises) and guidance to disclosure reflections to partner. At least one booster telephone call per week over the 4-week intervention period. The phone call is intended as a homework reminder and addresses any questions regarding the homework. Topic—Session 1: Mindful meditation focus (not emotional sharing focus); Session 2: Compassion and positive emotions and emotional disclosure task; Session 3: Gratitude and emotional disclosure; Session 4: Purpose and value-based living Who—A trained master’s level mind-body intervention specialist who is experienced in working with cancer patients and their families |
Based on mindfulness-based intervention literature for cancer and previous work in patients with stage I–III lung cancer and their partners
97
and integrating partner-assisted emotional disclosure, citing Porter et al.
62
Consultation with stakeholders not reported. Authors have conducted pilot work with metastatic lung cancer patients to inform and refine content. 56 |
Milbury et al.
67
16 females and 18 males with primary or metastatic brain tumors (>50% advanced) recruited from clinics US |
Online couple-based meditation with spoken emotional disclosure—sessions with therapist over FaceTime
Where—remote (online), exact location not reported Dose—Four weekly (60 min each) sessions. One third of each session dedicated to disclosure/reflection. Topic—Session 1: Mindful awareness of experiences; Session 2: Interconnectedness and feelings of compassion to themselves and their partner; Session 3: Things, events and people for which they are grateful; Session4: Value-based living (“What do you want your life to be about?”) Who—masters level licensed psychological counsellor intern |
Intervention was developed “building on existing evidence”; the emotional disclosure elements based on Porter et al.
62
partner-assisted emotional disclosure. Consultation with stakeholders not reported. |
Mosher et al.
57
87 women with metastatic (Stage IV) breast cancer attending comprehensive cancer centre with clinically elevated distress US |
Expressive writing—participants receive written instructions by post and are telephoned by research fellow prior to each session, then phoned back immediately after session. Overview of exercise provided before Session 1. Participants return essays to research team by post. Where: At home Dose: 20 min of writing, four sessions, over 4–7 weeks Topic: Deepest thoughts and feelings regarding the cancer Who: Research fellow |
Participants followed the protocol used by Zakowski et al.
98
for written emotional disclosure in cancer patients. Consultation with stakeholders not reported. |
Porter et al.
62
92 males and 38 females with gastrointestinal cancer (>50% advanced) (and their partners) recruited from hospital oncology clinics US |
Partner-assisted emotional disclosure—participants attend sessions with a trained therapist who guides the patient to describe the events and their feelings about a cancer-related experience that caused strong emotions; the partner is trained to listen supportively and receptively. Where: At the medical centre (although encouraged to continue the discussions at home) Dose: Four weekly sessions (session 1, 75 min; sessions 2–4, 45 min) spread over up to 8 weeks Topic: The events and feelings about cancer-related experiences that caused strong emotions Who: Trained master’s level therapist (social worker or psychologist) |
A novel intervention building on private emotional disclosure and the cognitive-behavioral marital literature. Consultation with stakeholders not reported. |
Steinhauser et al.
72,73
38 female and 44 male hospice patients with varying diagnoses and a prognosis of less than 6 months to live, recruited from inpatient and outpatient hospital, palliative care, and hospice settings 18 took part in qualitative interviews (2009). US |
Spoken disclosure (Outlook intervention) in semi-structured, audio-recorded interview. At the end of each session, participants were given a handout, printed on cardstock, which explored the session content to seed further reflection Where: In participants’ homes Dose: Three 45 min–1 h interviews, 1 week apart Topic: Issues related to life completion and preparation: Session 1: life review, accomplishments, proudest moments, and cherished times Session 2: issues of forgiveness, things they would have done differently, things left unsaid or undone. Session 3: lessons learned, heritage, and legacy Who: Research assistant trained not to give implicit or explicit messages or agenda of specific content/emotional disclosure |
Linking life review, emotional self-disclosure, and social gerontology literatures to inform development. A team of clinician and non-clinician researchers developed and refined Outlook’s content and structure. |
Steinhauser et al.
63
212 male and 9 female hospice ineligible advanced disease patients (to understand benefits in early palliative care context) recruited from outpatient clinics US |
Spoken disclosure (Outlook intervention)—as in Steinhauser 2008; 2009 Where: Not reported Dose: 3 interviews over the space of 1 month (typically 1 week apart). Topic: As in Steinhauser 2008; 2009 Who: Clinical social worker following manualized script and receiving ongoing supervision |
As in Steinhauser 2008;2009 |
Zhu et al.
65
6 males and 10 females with incurable cancer recruited from cancer clinics US |
Written disclosure in Creative Writing Workshops (“Write from the heart”)
Where: Not reported Dose: 2-h long weekly CWW × 4 weeks Topic: Express their feelings about random things in life and was not restricted to cancer-related topics Who: Professional writer |
Not reported; cite creative writing studies and workshops in the background. Consultation with stakeholders not reported. |
Secondary analyses of RCTs | ||
Laccetti et al.
79
Descriptive, correlational secondary analysis of RCT 68 women with metastatic breast cancer and life expectancy >6 months recruited from medical centers, community centers, and private clinic US |
Written disclosure
Where: Place and time of participant’s choosing Dose: Writing for 20–30 min a day for four consecutive days Topic: Writing about experiences with metastatic breast cancer, thoughts, and feelings related to not fully recovering from cancer and facing death, and any other traumatic and upsetting experiences in life that may or may not relate to breast cancer. Who: Not reported; alludes to being an intervention that can be prescribed and guided by nurses |
Based on Pennebaker’s expressive writing/facilitated disclosure and cite studies that have used EW in people with cancer (non-advanced).
16
Consultation with stakeholders not reported. |
Leal et al.
78
Qualitative evaluation of EW texts from RCT 16 females and 21 males with renal cell carcinoma recruited from RCT of EW in people with renal cell carcinoma of all stages US |
Written disclosure
Where: Participants’ home Dose: Four 20 min writing sessions over a 10 days period; between 1 and 4 days between sessions Topic: Writing about illness and other fears in response to four prompts: 1: First told you had cancer or about making decisions about your treatment 2: Adjusting to your cancer, how it has changed your life, or how it has affected your family 3: Fears, worries and concerns you may be experiencing 4: Thoughts and feelings about the future, or your fears and worries about the treatment not working Who: Research assistant (training not reported) |
Pennebaker and Beall’s intervention informed the general writing procedures.
16
Pilot work with cancer patients informed modifications of the intervention.61,98,99 |
Rose et al.69,71; Radziewicz
70
Evaluation of RCT 110 males and 51 females with advanced cancer (median life expectancy of one year or less) recruited from two ambulatory cancer clinics US |
Spoken disclosure via telephone-based Coping and Communication Support (CCS) intervention Where: Flexible as telephone-based Dose: Flexible and tailored to patient preference (all receive an initial phone call within 2 weeks of initial consultation; monthly calls recommended for those with high levels of distress; CCS Practitioners on call 24/7 to take calls) Topic: Patient concerns (psychological, existential, practical, symptoms, caregiver burden) and communication issues (family and friends, healthcare providers) Who: Advanced practice nurses with mental health training (CCS Practitioners) |
Based on review of psycho-oncology interventions, including SUPPORT intervention (nurse discussions with patients and families about care decisions) and the informing theoretical frameworks.
100
Stakeholder consultation not reported |
Non-RCTs | ||
Garcia Perez and Dapueto
52
Case study Female with advanced ALS Uruguay |
Spoken disclosure via computer-assisted psychotherapy
Where: Initially psychologist’s office, moving to patient’s home after 3 months Dose: Around 1 h, once a week, starting 4 months after diagnosis Topic: General trauma, client’s choice Who: Psychotherapist |
This psychotherapeutic approach was based on cognitive-behavioral and expressive supportive models and techniques. The technology is an adaptation of augmentative-alternative communication technologies to enhance patient’s speaking capabilities to facilitate psychotherapy. Stakeholder consultation not reported |
Milbury et al.
56
5 women and 8 men with primary or metastatic non-small cell lung cancer recruited from clinics US |
Couple-based meditation with spoken emotional disclosure
Where—Clinical consultation room in cancer centre Dose—Four hour long sessions over 2 weeks. Additional home materials (CDs, printed materials, exercises) also provided. Topic—Session 1: Mindful meditation focus (not emotional sharing focus); Session 2: Connection and loving-kindness for positive emotions; Session 3: Gratitude; Session 4: Purpose and value-based living Who—Master-level mind body specialist |
Based on principles of interdependence theory, mindfulness-based intervention literature, and related interventions developed for people with stage I–III lung cancer.
97
Intervention content evaluation part of study used to refine intervention based on participants’ written and oral feedback. |
Pon et al.
53
Case studies 5 hospice patients with terminal stage cancer with <6 months to live recruited from a hospice program China |
Spoken disclosure in context of playing “My Wonderful Life” (MWL) board game—participant moves along game board performing acts or picking an “Honest expression” card Where: Not reported Dose: Three sessions, each session 60–90 min long Topic: Life review and death preparation components: Making plans for leaving family members, saying final farewells, asking for forgiveness, showing appreciation for and leaving messages for others, recollections of personal contributions, strengths and wisdom, and contextualized perceived failures. Who: Therapist/facilitator |
Adapted from communication games used in other settings (trauma, pediatric populations).101,102
Stakeholder consultation not reported |
Taylor et al.
54
Qualitative evaluation 24 male and 12 female patients with end-stage renal disease recruited from routine outpatient clinic UK |
Spoken disclosure in response to either:
a. Patient Issues Sheet (n = 21) for participants to circle 2–3 main issues to discuss during consultation (Intervention 1) or b. Direct well-being question adapted from PHQ-9 (n = 20) (Intervention 2) Where: During consultations Dose: Single consultation Topic: Intervention 1: Emotional concerns related to illness that they would most like to talk about Intervention 2: Issues experience during the last week Who: Renal consultants who have completed training with renal psychologists covering motivational interviewing, open questions, affirmation and reflection, and three stage model of counselling |
Development process not reported. Consultation with stakeholders not reported. |
Tuck et al.
55
Mixed methods 4 male and 3 females with a diagnosis of terminal cancer recruited from palliative care unit US |
Narrative storytelling (spoken, audio-recorded and transcribed) through the PATS (Presence, Active Listening, Touch, Sacred story) intervention. Where: Private room in the palliative care unit or at home Dose: One interview spread over several 20–30 min sessions over 8–24 h (flexible depending of patient schedule and health) Topic: Experience of finding out they have cancer and there is no treatment or cure. If the following topics are not covered in the resulting story, probes were used exploring spirituality, sacred stories, healing, and change and growth Who: Initially by the principal investigator at the palliative care unit and latterly by a doctoral student trained in the protocol |
Developed by the first author/principal investigator based on spirituality and healing literature. Consultation with stakeholders not reported. |
CCS: coping and communication support; CFEW: compassion-focused expressive writing; EMO: emotional writing condition; EW: expressive writing; GDP: guided disclosure protocol; mBC: metastatic breast cancer; MWL: my wonderful life; NW: neutral writing; PATS: presence, active listening, touch, sacred story; PCU: palliative care unit; RCT: randomized controlled trial; RM: relaxation meditation; UC: usual care.