Abstract
Objective:
This review explored psychosocial interventions targeting adult cancer survivors’ reintegration following active cancer treatment. This included the types of interventions tested and the tools used to measure reintegration.
Introduction:
Cancer survivors face lingering health issues following the completion of cancer treatment. Many cancer survivors still experience unmet psychosocial care needs despite receiving follow-up care. Further, many survivorship interventions do not specifically address outcomes important to survivors. A number of primary studies have identified reintegration as an outcome important to cancer survivors. Reintegration is a concept that focuses on returning to normal activities, routines, and social roles after cancer treatment; however, it is emerging and abstract.
Inclusion criteria:
Studies involving adult cancer survivors (18 years or older at diagnosis) of any cancer type or stage were included in this review. Studies with psychosocial interventions targeted at reintegrating the person into daily life after cancer treatment were included. Interventions addressing clinical depression or anxiety, and interventions treating solely physical needs that were largely medically focused were excluded.
Methods:
A literature search was conducted in MEDLINE (Ovid), CINAHL (EBSCOhost), and Embase. Gray literature was searched using ProQuest Dissertations and Theses (ProQuest). Reference lists of included studies were searched. Studies were screened at the title/abstract and full-text levels, and 2 independent reviewers extracted data. Manuscripts in languages other than English were excluded due to feasibility (eg, cost, time of translations). Findings were summarized narratively and reported in tabular and diagrammatic format.
Results:
The 3-step search strategy yielded 5617 citations. After duplicates were removed, the remaining 4378 citations were screened at the title and abstract level, then the remaining 306 citations were evaluated at the full-text level by 2 independent reviewers. Forty studies were included that evaluated psychosocial interventions among adult cancer survivors trying to reintegrate after active cancer treatment (qualitative n=23, mixed methods n=8, quantitative n=8, systematic review n=1). Included articles spanned 10 different countries/regions. Over half of all included articles (n=25) focused primarily on breast cancer survivors. Many studies (n=17) were conducted in primary care or community-based settings. The most common types of interventions were peer-support groups (n=14), follow-up education and support (n=14), exercise programs (n=6), and multidisciplinary/multicomponent programs (n=6). While the majority of included studies characterized the outcome qualitatively, 9 quantitative tools were also employed.
Conclusions:
This review identified 6 types of interventions to reintegrate survivors back into their daily lives following cancer treatment. An important thread across intervention types was a focus on personalization in the form of problem/goal identification. Given the number of qualitative studies, future research could include a qualitative systematic review and meta-aggregation. Quantitative tools may not be as effective for evaluating reintegration. More primary studies, including mixed methods studies, utilizing consistent measurement tools are required. Furthermore, this work provides a basis for future research to continue examining the complexity of implementing such interventions to successfully achieve reintegration. To do so, primary studies evaluating interventions from an implementation science and complex systems perspective would be useful.
Review registration:
Open Science Framework https://osf.io/r6bmx
Keywords: follow-up care, life change events, new normal, scoping review, survivorship
Introduction
Cancer incidence is rising, and by 2040, the number of new cancer cases per year globally is expected to grow to 27.5 million.1 Additionally, cancer survivors are living longer due to better treatments and earlier detection.2 It is estimated that, among those newly diagnosed with cancer, approximately 65% will become long-term survivors.3,4 These individuals often live with late and long-term adverse effects from cancer and its treatment.5 For almost 2 decades, the Institute of Medicine has recommended that cancer survivors have follow-up visits with their health care provider to monitor for recurrence and to address these late and long-term effects.5 These effects may include body image concerns, lymphedema after surgery, brain fog after chemotherapy, or heart disease after radiotherapy.5,6
Despite the recommendation of follow-up care, some studies have found that survivors still feel ill-prepared to face the physical, psychological, and practical challenges accompanying cancer survivorship,7–11 in particular, survivors have expressed high levels of unmet psychosocial support needs.8 As a result, psychosocial care has become an area of focus for follow-up care.12 The Canadian Association of Psychosocial Oncology and the Canadian Partnership Against Cancer produced the 2009 clinical practice guidelines, which provide recommendations for the routine, standardized assessment of survivors’ psychosocial health care needs in the following domains: physical, informational, emotional, psychological, social, spiritual, and practical.13 These guidelines aim to help providers better identify unmet psychosocial needs and, thus, prompt timely referral to psychosocial supports.13
One reason survivors’ psychosocial needs remain unmet is the lack of interventions focused on the issues important to cancer survivors.14 Typically, follow-up care interventions have been evaluated for clinical outcomes, such as quality of life and patient/provider satisfaction.14,15 This was evident in 2 studies that found a disconnect between the outcomes assessed in randomized controlled trials (RCTs) of survivorship care plans and the outcomes stakeholders identified as important.14,15 Urquhart et al.16 conducted a qualitative study to identify survivorship outcomes important to health care providers, administrators, survivors, and caregivers across Canada in the context of follow-up care interventions. A priority outcome identified by key stakeholders in this study was returning to life after cancer treatment and adjusting to a “new normal.”16 The concept of finding a new normal after cancer treatment has been identified as important, particularly to survivors, in several primary studies.17–19
Returning to life after cancer treatment and finding a new normal, also known as reintegration, is defined as “a dynamic process involving the reorganization of former performance roles concurrent with the re-evaluation of personal abilities.”20 (p.300) Reintegration is a holistic concept that involves piecing together the many parts of one’s life and moving forward after cancer.20 No prominent or gold-standard tool is recognized to measure reintegration; however, examples of tools to evaluate this outcome include the Reintegration to Normal Living Index and the Perceived Profile Index.20
Prior psychosocial survivorship literature, including both primary studies21–23 and reviews,24–29 have primarily focused on interventions aimed toward individual components of reintegration, such as return to work,23,27 physical rehabilitation,24 psychosocial distress,21,22,25,29 or sexual function.26 As reintegration is holistic, interventions targeting this outcome should also be holistic, addressing the physical, emotional, spiritual, social, practical, and psychosocial domains. That said, some primary studies have examined psychosocial interventions targeting reintegration.17,18,30 For example, Shannonhouse et al.30 completed a mixed methods study in 2014 in which an 8-week wellness-oriented psychoeducational support was implemented in a group of 14 breast cancer survivors, and was evaluated using the Five Factor Wellness Inventory. Other studies have focused on qualitatively describing the role of peer support in reintegration.31–33 Still, reintegration is an emerging concept that is abstract and loosely defined in its evaluation. Thus, we conducted a scoping review to better understand what psychosocial interventions exist that target adult cancer survivors’ reintegration and to gain a clearer picture of the concept of reintegration and its measurement.
A preliminary search of PROSPERO, MEDLINE (Ovid), the Cochrane Database of Systematic Reviews, and JBI Evidence Synthesis was conducted, and no current or in-progress scoping reviews or systematic reviews on the topic were identified. The objectives, inclusion criteria, and methods for this scoping review were specified in advance and documented in a protocol.34 This scoping review investigated psychosocial supports and interventions tested to help survivors reintegrate after cancer treatment. It also explored how reintegration was described and measured.
Review questions
What psychosocial supports and interventions have been tested that focus on adult cancer survivors’ reintegration into daily life after active cancer treatment? More specifically:
What types of interventions have been tested?
How is reintegration measured (ie, qualitatively, quantitatively, with which tools)?
Inclusion criteria
Participants
This review considered studies that included adult cancer survivors (18 years of age or older at diagnosis) of any cancer type or stage. Studies that focused on people 18 years or older but included a small number of younger survivors, caregivers, or health professionals were considered for inclusion where data could be extracted by group. We accepted various definitions of cancer survivor; for example, individuals who were 1-year post-cancer diagnosis and had completed active cancer treatment (eg, chemotherapy, radiation, surgery for curative intent) or individuals who self-identified as a cancer survivor. Studies where most participants were younger than 18 years of age or were non-cancer survivors were excluded.
Concept
This review considered studies that explored psychosocial interventions targeted toward the outcome (ie, new normal or reintegration after cancer treatment). Psychosocial care included any of the following needs domains: physical (ie, support in adjusting to life with a colostomy), informational (ie, to reduce confusion and anxiety/fear; to familiarize oneself with the disease, treatment, and care system), emotional (ie, support in dealing with sadness or grief), psychological (ie, training to support coping skills or self-esteem), social (ie, support to strengthen family and social network connections), spiritual (ie, fostering hope and meaning), or practical (ie, assistance with return to work or financial assistance).13 The psychosocial domains captured by the interventions were chosen based on information provided by the included studies, definitions from the 2009 Canadian Association of Psychosocial Oncology and the Canadian Partnership Against Cancer Clinical Practice Guidelines,13 and consensus by 2 independent reviewers (SM and SS). Interventions were delivered via various methods (eg, peer support; clinician-led resource navigation; e-health mechanisms, such as online programs; educational programs).
We sought to determine what type of interventions/supports have been tested (eg, education program, peer support), and gathered information on the contents and delivery of the interventions. However, because we had no prior knowledge of the existing intervention types, we could not predetermine the categories for this concept of interest. Thus, the intervention modes of delivery noted in our data extraction sheet helped us identify patterns and categorize (post-hoc) interventions into types. Interventions were evaluated during the survivorship (post-active treatment) phase of the cancer trajectory. In addition to qualitative reports (eg, “moving on,” “finding a new normal”), reintegration as the outcome was measured using various tools (eg, Perceived Impact Problem Profile). Because a part of the review’s aim was to further explore and describe measurements of reintegration, independent reviewers (based on concept knowledge from prior literature, such as Ore and Foli20) came to a consensus regarding appropriate tools for the measurement of reintegration.
Studies were excluded from the review based on the following criteria. The existence of social support alone was not considered an intervention; an intervention needed to be arranged, defined, and built into a program to be considered for inclusion. For example, a peer-support group would be included, but informal family support would not. Interventions addressing clinical depression/anxiety (eg, cognitive behavioral therapy by a psychologist) and interventions to treat largely medical-focused physical needs and concerns (eg, pain medication, cognitive behavioral therapy for insomnia, rehabilitation for lymphedema) managed by a physician or other health professional were excluded. Although a related concept, studies that used quality-of-life questionnaires, but did not evaluate reintegration, were excluded. Quality of life encompasses a person’s functioning or happiness in various domains (eg, physical, social), but it does not speak to the experience of reintegrating, which encompasses how a person has renegotiated roles, responsibilities, or abilities in various psychosocial domains; therefore, they are different measures.
Context
This review considered studies from all geographical locations. The review considered international studies within various health care (eg, primary care and hospital-based) and community-based settings. We also considered telephone, online, or home-based interventions.
Types of sources
This scoping review considered quantitative, qualitative, and mixed methods study designs for inclusion. In addition, systematic reviews were considered for inclusion in this scoping review.
This scoping review considered both experimental and quasi-experimental study designs, including RCTs, non-randomized controlled trials, before and after studies, and interrupted time-series studies. Clinical prediction rule, economic evaluation, and diagnostic and accuracy studies were also considered. In addition, analytic observational studies, including prospective and retrospective cohort studies, case control studies, and analytical cross-sectional studies, were considered for inclusion. The review also considered descriptive observational study designs, including case series, individual case reports, and descriptive cross-sectional studies for inclusion.
Qualitative study designs included, but were not limited to, phenomenology, grounded theory, ethnography, qualitative description, action research, and feminist research. Editorials, guidelines, commentaries, and text and opinion papers were excluded from this scoping review, given concerns about the comprehensiveness of the included information.
Methods
This scoping review was conducted in accordance with the JBI methodology for scoping reviews,35 and in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).36 This review was conducted in accordance with an a priori protocol.34 The protocol is registered with Open Science Framework (https://osf.io/r6bmx).
Search strategy
The search strategy aimed to locate both published and unpublished primary studies and reviews. A preliminary limited search of MEDLINE (PubMed), CINAHL (EBSCOhost), and Embase was conducted to identify studies of interest relevant to the topic. After consulting with librarians, it was decided that MEDLINE (Ovid) would be used instead of MEDLINE (PubMed), as the Ovid platform allows the use of proximity operators (ie, adj), which returned a more relevant search. The text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles, were used to develop a full search strategy for MEDLINE (Ovid). The search strategy, including all identified keywords and index terms, was adapted for each included information source. The full search strategies are provided in Appendix I. The reference lists of articles included in the review were screened for additional papers.
Studies originally published in a non-English language were included if a full-text manuscript was translated to English by the original authors; otherwise, they were excluded due to feasibility for translation (eg, cost, time). Studies were not limited by a date range.
The databases searched included: MEDLINE (Ovid), CINAHL (EBSCOhost), and Embase. A search for unpublished studies was conducted in ProQuest Dissertations and Theses (ProQuest).
Study selection
Following the search, all identified records were saved to Mendeley V1.19.8 (Mendeley Ltd., Elsevier, Netherlands) then uploaded into Covidence (Veritas Health Innovation, Melbourne, Australia), and duplicates removed. Following a pilot test, titles and abstracts were screened by 2 independent reviewers (SM and SS) against the inclusion criteria for the review. Potentially relevant papers were retrieved in full, and their citation details imported into Covidence. Full-text studies that did not meet the inclusion criteria were excluded, and reasons for their exclusion are provided in Supplemental Digital Content 1: http://links.lww.com/SRX/A36. Any disagreements that arose between the reviewers were resolved through discussion or with a third reviewer (RU).
Data extraction
Data were extracted from papers included in the scoping review by 2 independent reviewers (SM and SS) using a data extraction tool developed by the reviewers.34 The data extracted included specific details about the population (eg, number of participants, cancer type, age range); concept (eg, psychosocial intervention domain, description of intervention components and delivery, study outcome definition and measurement tools); context (eg, study setting, country); methods (eg, study design); and key findings relevant to the review question.
Data analysis and presentation
The results are summarized and presented in tables and figures, accompanied by a narrative summary, aligned with the objective of this scoping review.
Deviations from protocol
Subquestions were added to the review question to help organize results by intervention type and outcome measures. Originally, review questions referred to what interventions exist, have been tested, or have been studied (used interchangeably). Following reviewer feedback, we changed the terminology for consistency to “what types of interventions have been tested?” Similarly, we initially asked how reintegration is described or measured. This was changed to “how is reintegration measured?” We planned to report all results in narrative and tabular format; however, following reviewer feedback, we felt that showcasing the qualitative descriptors of reintegration in figure format was meaningful.
Results
Study inclusion
Database searches were conducted on June 8, 2022, yielding 1690 citations in MEDLINE (Ovid), 1437 citations in CINAHL (EBSCOhost), 2192 citations in Embase, and 131 citations from ProQuest Dissertations and Theses (ProQuest). On August 2, 2022, an additional 167 citations were identified from hand searching included articles (see Figure 1).37 All citations described above were uploaded into Covidence; this yielded a total of 5617 citations uploaded. A total of 1239 duplicates were removed, which left 4378 citations that were screened at the title and abstract level by 2 independent reviewers. At the title and abstract level, 4072 citations were excluded. Of the 306 full-text sources reviewed by 2 independent reviewers (SM and SS), 266 were excluded. The main reason papers were excluded at full-text screening was due to interventions that did not align with the study criteria; see Figure 1 and the Supplemental Digital Content 1, http://links.lww.com/SRX/A36, for further details of papers excluded on full-text examination, and their reason for exclusion. Forty studies were included in the review.17–19,30–33,38–70
Figure 1.
Search results and study selection and inclusion process37
Characteristics of included studies
The population samples varied in size between 4 participants53 and 431 participants.64 Most included studies primarily examined breast cancer survivors (n=25).17,30–33,40–52,55–57,60,67–69 Nine studies included survivors of multiple cancer sites.17,18,38,41,53,61,66,67,70 Two studies focused specifically on prostate cancer survivors39,64 and two other studies on head and neck cancer survivors.19,62 Three included solely gynecologic cancer survivors,58,59,65 and 1 included only colon cancer survivors.63
The articles included in this review were from 10 countries or regions, including the United States (n=12),17,30,31,44,48,53–55,61,64,68,69 the United Kingdom (n=7),43,45,49,58,59,62,67 Canada (n=6),33,51,52,56,57,60 Australia (n=5),38,40,41,46,47 Denmark (n=3),19,39,65 Norway (n=2),18,63 China (n=1),70 Malaysia (n=1),50 the Netherlands (n=1),66 and Turkey (n=1).42 One study originated from both Australia and the United States.32 The majority of the included articles were qualitative studies (n=23),19,31–33,38–43,x46,51,52,56–60,63,65,68–70 8 were mixed methods,17,18,30,45,53,55,61,67 8 were quantitative,44,47,48,50,54,62,64,66 and 1 was a systematic review.49 There was overlap of 1 primary study68 included in the systematic review.49 Both studies were listed under the same intervention type and outcome. Of the 8 quantitative studies, 5 were RCTs,44,47,48,64,66 1 was a quantitative follow-up questionnaire to a previously conducted RCT,50 1 was a pre-post design,54 and 1 was quasi-experimental.62
Most commonly, interventions of included studies were carried out in primary care or community settings (n=17).18,19,32,33,38,40,45,51–53,55–57,60,61,68,70 Six studies cited hospital/acute care locations as the intervention setting17,41,46,47,63,65; 7 articles did not clearly describe the intervention setting30,31,39,44,48–50; 7 interventions took place either in participants’ homes,42,62 via telephone,58,59,69 or online54,64; and 3 articles described interventions as including a combination of primary care or community and home, telephone, or online settings.43,66,67
Appendix II describes the relevant characteristics of the included studies, including population (eg, cancer type, age), concepts (eg, psychosocial interventions, reintegration), and context (eg, hospital, community, telephone). Specifically, the table in Appendix II outlines each included study’s first author, year of publication, country, study design, aim, population, intervention components, psychosocial domain and setting, mode of delivery, and study findings related to reintegration.
Review findings
Intervention type
The included studies had different types of psychosocial interventions. We categorized the interventions into 6 groups based on type. Intervention type categories were identified from patterns in the information we extracted according to our published data extraction tool under the section “mode of delivery,” which included the options of peer support, navigation, e-health, clinician-led, paper-based education, multicomponent education program, or other (with a text box for description). The mode of delivery extracted for each included study can be found in Appendix II.
The 6 intervention types are peer support, peer support with exercise, follow-up education and support, exercise interventions, multidisciplinary rehabilitation/multicomponent programs, and other interventions. Peer support,31–33,38,40,45,51,52,55–60 and follow-up education and support17,38,42,44,46,48,50,54,62–65,67,69 were the most common intervention types among the included studies. Further, we distinguished peer-support groups with exercise33,45,51,52,56,57,60 from those without (Table 1). Exercise interventions41,43,49,53,61,68 and multidisciplinary rehabilitation/multicomponent programs18,19,30,39,47,70 were the next most common and equally cited interventions. Interventions classified under the multidisciplinary rehabilitation/multicomponent program category involved programs that included the services of at least 3 different professionals or holistic programs, and offered at least 3 types of service (eg, social support, physical activity, education). Finally, an “other” category was created for interventions66 that met our inclusion criteria but did not fit into the predefined categories (ie, a return-to-work program). All studies were placed into one main category, except for a qualitative study by Connerty et al.,38 which mentioned peer support and education as separate interventions.
Table 1.
Types of interventions targeting cancer survivors’ reintegration into daily life after treatment, as reported in included studies
| Type | Interventions | Duration and/or frequency |
|---|---|---|
| Peer support31–33,38,40,45,51,52,55–60 | Traditional peer-support group | Unclear |
| The Cancer Voices advocacy/support group | Unclear | |
| Motorcycle riding (Challenge Event, Amazon Heart Thunder) | One 7 days, one 10 days with a 6-month online forum discussion prior to in-person | |
| Support organization (Breakfast Club) | Monthly meetings | |
| Peer-support program (Women Helping Women) | 3 months with weekly phone calls recommended | |
| Peer support with exercise33,45,51,52,56,57,60 | Dragon boating: a team sport (creating access to emotional support) where about 20 participants paddle a 12 m–long boat in a low-impact exercise with low injury risk | Generally, dragon boat training takes place in the winter, and the active season is from spring to early fall. Studies cited varying degrees of participant experience in duration and frequency of dragon boating: 2 seasons; no specification of experience or duration and frequency; first season; a mixture of those in their first season and those involved for a number of years and those in at least their second season (2-8 seasons). |
| Peer-support walking group (Best Foot Forward) | 30- to 60-minute walks | |
| Follow-up education and support17,38,42,44,46,48,50,54,62–65,67,69 | The Mid-Life Directions Workshop | 6 × 2-hour sessions |
| Educational materials and telephone support from an oncology nurse | Unclear | |
| The Staying Healthy After Cancer course | Unclear | |
| A psychoeducational personalized intervention | 4 × 60- to 90-minute sessions | |
| A personalized treatment summary and discussion with recommendations based on guidelines from the American Society of Clinical Oncology | 1 × 1-hour session | |
| Specialist breast cancer nurse follow-up | An initial follow-up visit (yearly thereafter) until discharge from the clinic at 3 or 5 years if no recurrence | |
| Coaching using motivational interviewing and a survivorship care plan (POSTCARE intervention) | 1 coaching encounter (mean: 75 minutes; range: 31-126 minutes) | |
| Stay Abreast Move Ahead program | 4-week program | |
| Online survivorship care plan/resource program (Cancer Survivorship Patient Engagement Toolkit and Well Beyond Cancer) | 3-month program with bi-weekly follow-up (6 sessions) | |
| Home educational visits | A minimum of 2 and maximum of 6 home visits (mean: 4), with visits lasting 30 minutes, every 2 weeks | |
| Courses in life management and coping skills | Unclear | |
| Web-based program to improve coping (PROGRESS intervention) | Available as needed | |
| Nurse-led, person-centered education intervention to develop life skills and problem-solve | 4 conversations at least 2-3 weeks apart | |
| Life-coaching intervention for goal attainment | First session 2 hours, then 5 telephone sessions up to 60 minutes at approximately 2-week intervals over 12 weeks | |
| Exercise interventions41,43,49,53,61,68 | Individualized structured exercise, the IMPACT exercise program | Muscular fitness routine twice weekly, 30 minutes of moderate cardiovascular activity most days, 6-month program access, and 12 ×1-hour personal training sessions |
| Prescribed exercise in accordance with the 2010 American College of Sports Medicine Guidelines (aerobic and resistance training) | 1 class per week for 12 weeks or 2 per week for 6 weeks | |
| Community exercise classes (walking, cycling, aerobics, strength training) with home workout and exercise educational discussion | 12-week program with 2 classes (45 minutes each) and 1 home workout per week, with 6 weeks of exercise educational discussion | |
| Mindful Movement Program; The Copenhagen Physical Activity after Cancer Treatment (PACT) | 8 weeks | |
| Healing with Horses Program | 10 weeks with 1-hour weekly sessions | |
| Livestrong program (at the YMCA) | 12-week program, twice weekly, each session 75 minutes | |
| Multidisciplinary rehabilitation/multicomponent programs18,19,30,39,47,70 | The Centre (a community cancer support center) with meditation, psychologist meetings, support groups, psychoeducation, health talks, choir, yoga, and other activities | Unclear |
| The rehabilitation program (RePCa) with nurses, physiotherapists, doctors, social workers, and sexologists | 2 sessions with a nurse, 2 with a physiotherapist, referrals to other providers as needed | |
| A goal-oriented rehabilitation program with an interdisciplinary team | 3-week lodge-style program with 7 psychoeducational sessions, 2-3 physical activity sessions daily (45 minutes) plus at least 1 outdoor activity, 1 family visit weekend, and 1-week follow-up visits after 3 and 6 months | |
| Intensive multidisciplinary rehabilitation intervention | 1-hour therapy sessions (divided in 30-minute halves) 2-3 times per week for up to 8 weeks | |
| Multidisciplinary residential rehabilitation program | 5-day lodge-style program with 2 days of follow-up | |
| Wellness-based psychoeducation group (Finding Your New Normal) with physical activity, educational and group discussion sessions, as well as access to providers such as a nurse, chaplain, or mental health counselor | 8-week program with weekly meetings (2 hours) | |
| Other interventions66 | A tailored return-to-work program that has coaching sessions with a reintegration coach to help prepare a plan (1-on-1) for return to work | Intervention duration is dependent on the level of need. The maximum duration for the preparation for return-to-work portion was 3 months. The maximum duration for the return-to-work portion was 3 months. Further, a 1-month delay was allowed within the whole program to allow for unforeseen events, such as illnesses or holidays. Therefore, the maximum duration of the return-to-work program was 7 months. |
A common thread across intervention types was a focus on personalization. Peer-support groups allow survivors the space to speak about issues that are important to them. A few exercise43,53,68 and multidisciplinary18,39,47 interventions mentioned focusing on goal-setting and adapting to participants’ needs. The return-to-work intervention was also person-centered in its approach, as it included different program pathways based on an individual’s circumstances.66 However, this concept was most evident through goal and problem identification within follow-up education and support.17,42,48,62,64,65,67
Peer support
Fourteen studies described peer-support interventions and evaluated their impact on cancer survivors’ lives after cancer treatment.31–33,38,40,45,51,52,55–60 Connerty et al.,38 a qualitative study with cancer survivors of various disease sites, and Nicks et al.,55 a mixed methods study of breast cancer survivors, both reported that their participants expressed that being involved in support groups helped them adapt and adjust to life after cancer. Two qualitative studies reported on the benefit of an Amazon Heart Peer Support Challenge.32,40 The challenge involved a group motorcycle ride by breast cancer survivors. It reportedly helped participants re-prioritize life roles and responsibilities,32 and move on from their breast cancer experience.40 Pistrang et al.58 and Pistrang et al.59 reported on the same 3-month-long peer-support intervention, Women Helping Women. Women recently diagnosed and treated for gynecologic cancer received telephone peer support from women who had completed treatment for gynecologic cancer a minimum of 1 year prior. The authors found that the intervention benefited both groups of women with moving on in life after their cancer experience.58,59
Peer support with exercise
Seven of the 14 articles with peer-support interventions included an exercise component.33,45,51,52,56,57,60 Six articles qualitatively outlined the impact of dragon boating (also known as Asian long boating) on reintegration.33,51,52,56,57,60 Dragon boating is a peer-support intervention and team water sport with Chinese roots, originating over 2000 years ago. Participants race by paddling a long boat in synchrony. Some studies33,60 described the benefit of dragon boating over traditional peer-support interventions in helping participants move on with life after cancer. The themes from these studies that aligned with reintegration were, for example, “moving on,” “getting life back (to normal or a new normal),” “reawakening of self,” and “creating a new life.”
Follow-up education and support
Fourteen included studies focused primarily on follow-up education and support.17,38,42,44,46,48,50,54,62–65,67,69 Interventions ranged from education booklets and provider follow-up visits69 to web-based learning modules.54 Many education programs from the included studies shared a common thread: they helped survivors identify specific problems or goals important to them to help them move forward, and then worked with survivors to address the issue and achieve their goal.17,42,48,62,64,65,67 This component of identifying survivors’ problems or goals to then address them through education and support seemed important for survivors’ feelings toward successful reintegration. Other studies explored nurse-led follow-up education.46,65 In general, these interventions helped survivors discover their potential, move on from their cancer, adjust to a new self-image, and promote rebirth.46,65
Exercise interventions
Exercise programs for adult cancer survivors were described in 6 of the included studies.41,43,49,53,61,68 These programs helped survivors move forward after cancer treatment. The majority of the exercise programs consisted of aerobic and strength-training exercises and group exercise sessions.41,43,61,68 Most exercise programs were led by either a personal trainer49,68 or a similarly trained exercise professional.43,61
Multidisciplinary rehabilitation/multicomponent programs
Six studies included multidisciplinary and/or multicomponent programs to help survivors reintegrate and adapt to life after cancer and treatment.18,19,30,39,47,70 Four of these studies labeled their programs as multidisciplinary rehabilitation programs, and services were provided by at least 3 different types of professionals (eg, physiotherapists, occupational therapists, social workers, nurses).18,19,39,47 Two studies included a residential component where survivors lived together during the rehabilitation program.18,19 Multicomponent programs included elements such as education (eg, health seminars), physical activity (eg, yoga), group discussion, and others (eg, choir, meditation).30,70 The more multifaceted the program, the more areas of one’s life survivors felt were facilitated back to normal.
Other interventions
We categorized 1 psychosocial intervention as “other,” as it did not align with any prior intervention types; however, it did meet the review’s inclusion criteria. van Egmond et al.66 conducted an RCT of the effectiveness of a tailored return-to-work program for cancer survivors. The program provided 1-on-1 support from a reintegration coach who helped participants navigate barriers and find a path back to work. While our search revealed multiple return-to-work interventions (Appendix II), this study was the only one where a singular return-to-work intervention was evaluated for reintegration in broader society instead of just the workplace.
Intervention timing
There was variation in duration and frequency within each intervention type, with some being short-term and some being long-term. Shorter-term interventions (eg, 1 to 10 days) tended to be peer support32,40 or follow-up education and support interventions.42,44,48 Dragon boating33,51,52,56,57,60 and exercise interventions41,43,49,53,61,68 generally lasted several weeks to months. Interventions mentioned in some qualitative studies, particularly peer-support interventions,31,38,70 lacked detail in their description of intervention components, duration, and frequency.
Outcome measurements
Qualitative measures
The majority of included studies (n=30) qualitatively described their findings. Figure 2 depicts common phrases participants in the included studies used to describe reintegration. Examples of these phrases include experiencing a “new normal,”17,18,30,55 “moving on, forward, or beyond cancer,”40,49,54,59,61,65,67,68 experiencing a “rebirth,”46,70 and “get back on track” (to life).57,58,61,68
Figure 2.
Phrases used in included studies to qualitatively describe reintegration into daily life among adult cancer survivors
Quantitative measures
Nine quantitative tools aligned with reintegration were used in the included studies (Table 2): the Impact of Cancer Scale,44,54 Perceived Impact Problem Profile,47,50 Canadian Occupational Performance Measure,18 Five Factor Wellness Inventory,30 Practical Concerns Scale,64 Self-efficacy for Re-entry Scale,64 Social/Role Activities Limitations Scale,48 Utrecht Scale for Evaluation of Revalidation and Participation,66 and Work and Social Adjustment Scale.62 Amongst the 8 mixed methods studies included, only 2 contained quantitative outcome measures relevant to our concept of interest (reintegration).18,30 Compared with qualitative reports, studies that used quantitative measures seemed to report more inconclusive impacts of interventions on reintegration.
Table 2.
Quantitative tools to measure cancer survivors’ reintegration into daily life, as reported in included studies
| Tool | Tool description | |
|---|---|---|
| Impact of Cancer Scale44,54 | Version 1: 81-item questionnaire. 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree). Consists of 2 higher-order summary scales: positive and negative. 10 sub-scales: physical health awareness, physical body changes, psychological positive self-evaluation, psychological negative self-evaluation, existential positive outlook, existential negative outlook, social life interferences, social value of relationships, meaning of cancer, and health worry.44,71
Version 2: 47-item questionnaire. 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree). Consists of 2 higher-order summary scales, a positive impact scale and a negative impact scale, and 3 subscales that measure employment and relationship effects.54,72 |
|
| Perceived Impact Problem Profile47,50 | A 23-item scale with 5 subscales (mobility, self-care, relationships, participation, and psychological well-being). Respondents rate how much impact their health problem (in this case, cancer) had on (item of function or activity) using a 6-point scale, from no impact to extreme impact. Higher scores indicate greater impact.73 | |
| Canadian Occupational Performance Measure18 | The measure focuses on the interrelationship between the person, their environment, and their occupations performed. Participation is operationalized as performance and satisfaction in 3 areas (self-care, productivity, and leisure). Participants identify problems within the 3 areas. They rate each problem by importance to prioritize them, and score both performance and satisfaction with performance. A 10-point interval scale is used, ranging from 1 (not able to do it or not satisfied at all) to 10 (able to do it extremely well or extremely satisfied). A total score is calculated by adding the points for performance and satisfaction of all problems, divided by the number of problems at the initial and final assessment. The difference in score is calculated by subtracting the performance and satisfaction scores at initial assessment from the respective scores at the final assessment, giving a value for participation. An increase in score of 2 points or more indicates increased participation and is a clinically significant change.74 | |
| Five-Factor Wellness Inventory30 | Adult form (5-F-Wel-A): 73-item questionnaire. Measures factors of the Indivisible Self Model of Wellness (IS-Wel Model). Respondents rank wellness beliefs and behaviors using a 4-point Likert scale ranging from strongly disagree to strongly agree. The factor structure includes a single higher order total wellness factor; with all items positively loaded. Shannonhouse et al.30 specifically used the total wellness score and the 5 second-order factors (creative, coping, social, essential, and physical selves).75 | |
| Practical Concerns Scale64 | An adapted 12-item practical concerns scale. Respondents rate their concerns about managing practical aspects of their lives, including finances, employment, and healthy lifestyle activities, on a 5-point scale from 1 (strongly disagree) to 5 (strongly agree). A higher score means there is greater concern.64 | |
| Self-efficacy for Re-entry Scale64 | A 14-item questionnaire. Each item is scored on an 11-point scale, ranging from 0 (not at all confident) to 10 (completely confident). Respondents answer questions about their ability to self-manage relationships, stress, medical care, and side effects in their first-year post-cancer treatment as they reenter their various roles (eg, spouse, employee, friend).76 | |
| Social/Role Activities Limitations Scale48 | A 4-item scale ranging from 0-16. Higher scores indicate greater limitations in activities.48 | |
| Utrecht Scale for Evaluation of Revalidation and Participation66 | Participation in society is assessed on 3 subscales: frequency, restriction, and satisfaction. 31-item questionnaire. Frequency items are scored from 0-5. Higher scores mean higher level of participation. The restriction subscale is scored from 0-3. Satisfaction with participation items are scored from 0-4, with higher scores indicating more satisfaction. The scores for frequency, restrictions, and satisfaction scales are converted to scores on a 0-100 scale. There is no total overall score.77 | |
| Work and Social Adjustment Scale62 | A 5-item questionnaire of social impairment. Items are in the following domains: work, home management, social leisure, private leisure, and interpersonal relationships attributable to an identified problem (in this case, cancer). Respondents rate each question from 0 (no impairment at all) to 8 (very severe impairment). A score greater than 20 indicates moderate to severe social impairment. A score of 10-20 means significant functional impairment, and less than 10 indicates subclinical disease.78 | |
Discussion
To the authors’ knowledge, this is the first scoping review to describe the psychosocial supports and/or interventions that have been studied targeting adult cancer survivors’ reintegration into life after active cancer treatment. Of the 40 studies that met the inclusion criteria, the majority qualitatively described interventions, such as peer-support groups, follow-up education and support, exercise programs, and multidisciplinary programs. These interventions often aimed to identify and address the goals and needs that were most important to the survivors in order to help them move forward with their lives. This highlights the importance of survivorship care being individualized and person-centered.
There is limited existing literature regarding reintegration interventions aimed at chronic diseases outside of cancer. This is perhaps unsurprising, as reintegration is a relatively new concept. Most literature is focused on returning to work and the policies, supports, or interventions put in place to support those with chronic disease during vocational reintegration.79–81 Similar barriers to reintegration exist for other conditions that leave patients with long-term effects,79,82 and interventions to address these are comparable to cancer interventions. For example, for individuals with brain injuries, post-traumatic stress disorder, or hip fractures, interventions mainly include information sessions, social support interventions, multicomponent interventions, physical exercise programs (eg, yoga), or residential treatment.83–86
Surprisingly, only a small number of the included interventions were delivered online. This may be partly due to the age demographic. However, as Generation Z and millennials age, there will likely be a further need to develop online survivorship interventions. In addition, the shift to online environments due to the COVID-19 pandemic has highlighted both the need for virtual interventions and the ability of patients to adapt to this type of technology. A scoping review by Gentili et al.,87 which spanned 17 countries, found that e-health interventions, such as telephone support for goal-setting or internet-based therapy, effectively meet patient needs and reduce health care system costs. Online interventions, such as support groups, also allow users to access multiple types of support from anywhere, which reduces access barriers (eg, geographical, financial).88 This presents opportunities to evaluate online interventions and gain evidence on how they can successfully aid survivors with reintegration back into their normal lives, without additional strain on the health care system.
Our study highlights the relevance of psychosocial interventions targeting reintegration being person-centered and addressing the issues and goals most important to cancer survivors. This is a common theme within cancer survivorship, as many rehabilitation and follow-up programs have identified goal-setting as an important method to rehabilitate cancer survivors following treatment.18,89–91 The mechanism for this has been explained in a study by Hauken et al.,18 where the authors found that guiding survivors to set goals provides them with something to work toward, which gives them motivation, commitment, and responsibility over their recovery. Goal-setting allows survivors to see what they are capable of and realize that they can still do things despite their limitations.92 However, one systematic review that examined goal-setting as a component of rehabilitation for adults with acquired disability found inconclusive evidence on the impact of goal-setting on social participation.93 More research on the effectiveness of goal setting within cancer survivorship is still needed.
Most interventions identified were conducted in primary care or community settings. This was somewhat surprising, as much of the care across the cancer continuum is hospital-based, although there has been a push to transfer survivorship follow-up care to primary care.94–96 Additionally, support in survivorship is often not funded through the traditional health care system; thus, survivors independently seek out programs, such as support groups.97 This may provide a rationale for the limited number of hospital-based interventions. Survivorship has increased over the past few decades,2 and the current oncology system was not built with survivorship at the forefront. As decision-makers work to expand survivorship services, the setting for these services should be kept in mind. When provided primarily outside of the traditional health system, equity issues can arise.97
Because there is currently no gold-standard tool to measure reintegration, it was unsurprising that there was less evidence and mixed results from studies that quantitatively evaluated these interventions. Of the 9 tools identified, 2 were used in multiple studies. Outcome measures for reintegration interventions of other chronic diseases are similar in their focus on increased participation in daily living, social activities, and life adjustment.84,86,98 Examples of tools used included the World Health Organization Five Well-Being Index and the Satisfaction with Life Scale.84 These are different tools from those we found in the cancer survivorship reintegration literature. However, neither body of literature revealed any tool used consistently to measure reintegration. This makes it difficult to compare interventions to determine which ones most successfully lead to reintegration, and highlights the need to develop standardized quantitative tools with consistent indicators of reintegration.
Limitations of the review
The scoping review is not without limitations. The review gives readers information on the current state of knowledge related to the research question. The review did not assess methodological quality; therefore, recommendations for practice cannot be made or graded, and the effectiveness of interventions cannot be concluded. To glean meaning from the interventions tested in the included studies, we made notes of commonalities and differences in findings; however, as methodological quality was not assessed, findings must be interpreted with caution. Additionally, our search was limited to the English language due to feasibility (eg, time, cost); thus, our results are not representative of relevant literature in other languages, and this may be why most included studies were published in English-speaking countries. Our search included 3 key databases and 1 source of gray literature, and we excluded guidelines and text and opinion papers.
While, ideally, we would have searched more databases, we were limited due to resources (ie, time, staffing). Furthermore, the concepts (ie, psychosocial interventions and reintegration) are broad and abstract. Given these points, some potentially relevant papers may not have been identified with these search strategies. Still, the authors worked with 2 librarians to craft a search representative of the concepts.
Conclusions
Cancer survivors experience several unmet needs and long-term side effects following treatment that can impact their ability to reintegrate into their normal routines and activities. Our study explored what psychosocial supports and/or interventions have been tested that focus on adult cancer survivors’ reintegration into daily life after active cancer treatment. We found that, most commonly, reintegration interventions include peer-support groups, education or exercise programs, and multidisciplinary/multicomponent programs, which are often personalized to meet the goals of survivors.
Implications for research
Our study highlights 6 types of interventions tested to reintegrate survivors into their daily lives following cancer treatment. However, evaluating the effectiveness of such interventions requires further research and assessment of methodological quality. While it is beyond the scope of this review to determine the effectiveness of interventions aimed toward reintegration, it is worth noting that some included studies, particularly of qualitative design, lacked consistency in reporting. Specifically, there were omissions of intervention components, timing, frequency, and setting information. In order to aid future study comparisons, authors should ensure that they are reporting enough details so that these interventions can be replicated and implemented. Future studies should consider using reporting guidelines, such as the Workgroup for Intervention Development and Evaluation Research recommendations.99
Reintegration is a relatively new research outcome; there is a lack of consistent or gold-standard measurement tools. It is a complex and multifaceted concept that may be difficult to capture through quantitative measures alone. In this case, qualitative evaluations and mixed methods studies may offer a better understanding. Due to the number of primary qualitative studies that already exist on this topic, future research directions could include a meta-synthesis. However, qualitative descriptions are subjective and include various phrases representative of reintegration. By leveraging qualitative descriptions of reintegration by survivors, we can identify and develop quantitative measures that are generalizable and important to the survivors themselves; future research should include primary studies that develop and validate such tools.
Cancer survivors’ reintegration into daily life after cancer treatment is a personal process and one influenced by many social factors. Prior to adopting or implementing interventions as a part of standard practice, it will be important to further tease out which psychosocial intervention components and settings render them helpful (or not) to survivors’ reintegration. To do so, future primary studies should use methodology conducive to this, such as implementation science and complex adaptive systems methodology.
Acknowledgments
Robin Parker, evidence synthesis and information services librarian at Dalhousie University, and Louise Gillis, research data librarian at Dalhousie University, for consultation on the study search strategy.
Funding
This scoping review was funded by a Foundation Scheme Grant from the Canadian Institutes of Health Research, grant number FDN-154323 for RU. The funder had no role in the design, execution, interpretation, or writing of the study.
Author contributions
RU and SM contributed to the methodology. RU, SM, and SS wrote the original draft, and reviewed and edited the draft. RU acquired the funding. All authors approved the submitted version and agree to be personally accountable for the author’s own contributions.
Availability of data, code, and other materials
Available upon request.
Supplementary Material
Appendix I: Search strategy
MEDLINE (Ovid)
Search conducted: June 8, 2022
| Search | Query | Records retrieved |
|---|---|---|
| #1 | (cancer* adj3 survivor*).ti,ab,kf. | 24,683 |
| #2 | Cancer Survivors/ | 7325 |
| #3 | ((beyond or after or post treatment) adj3 (cancer* or oncolog*)).ti,ab,kf. | 52,845 |
| #4 | 1 or 2 or 3 | 74,844 |
| #5 | ((education* or navigat* or information*) adj2 (intervention* or support* or program*)).ti,ab,kf. | 94,360 |
| #6 | ((internet or web* or online or app or social media or texting or text-based) adj2 (intervention* or support* or program*)).ti,ab,kf. | 13,717 |
| #7 | ((psychosocial or psycho social) adj2 (intervention* or support* or program*)).ti,ab,kf. | 13,105 |
| #8 | ((Peer* or lay or social* or group*) adj2 (intervention* or support* or program*)).ti,ab,kf. | 142,729 |
| #9 | ((meditat* or self-care) adj2 (intervention* or support* or program*)).ti,ab,kf. | 2156 |
| #10 | exp Psychosocial Intervention/ or exp Internet-Based Intervention/ or exp social support/ or exp aftercare/ or exp “Patient Education as Topic”/ or exp “Patient Education Handout”/ or exp needs assessment/ or exp mind-body therapies/ or exp sensory art therapies/ or exp spiritual therapies/ | 496,403 |
| #11 | 5 or 6 or 7 or 8 or 9 or 10 | 686,188 |
| #12 | Adaptation, Psychological/ or exp Emotional Adjustment/ or exp Resilience, Psychological/ or exp Life change events/ or exp patient preference/ | 137,392 |
| #13 | (reintegrat* or posttraumatic growth or post traumatic growth or resilien* or new normal).ti,ab,kf. | 56,384 |
| #14 | ((psychological* or emotion*) adj2 (adjust* or adapt*)).ti,ab,kf. | 7334 |
| #15 | “Quality of Life”/px [Psychology] | 31,750 |
| #16 | 12 or 13 or 14 or 15 | 213,777 |
| #17 | 4 and 11 and 16 | 1690 |
| No limits selected. | ||
CINAHL (EBSCOhost)
Search conducted: June 8, 2022
| Search | Query | Records retrieved |
|---|---|---|
| #1 | TI ((cancer*) N3 (survivor*)) OR AB ((cancer*) N3 (survivor*)) | 17,265 |
| #2 | MH Cancer Survivors+ | 12,424 |
| #3 | TI ((beyond OR after OR “post treatment”) N3 (cancer* OR oncolog*)) OR AB ((beyond OR after OR “post treatment”) N3 (cancer* OR oncolog*)) | 19,774 |
| #4 | 1 or 2 or 3 | 39,502 |
| #5 | TI ((education* OR navigat* OR information*) N2 (intervention* OR support* OR program*)) OR AB ((education* OR navigat* OR information*) N2 (intervention* OR support* OR program*)) | 73,980 |
| #6 | TI ((internet OR web* OR online OR app OR “social media” OR texting OR “text-based”) N2 (intervention* OR support* OR program*)) OR AB ((internet OR web* OR online OR app OR “social media” OR texting OR “text-based”) N2 (intervention* OR support* OR program*)) | 11,647 |
| #7 | TI ((psychosocial OR “psycho social”) N2 (intervention* OR support* OR program*)) OR AB ((psychosocial OR “psycho social”) N2 (intervention* OR support* OR program*)) | 8662 |
| #8 | TI ((Peer* OR lay OR social* OR group*) N2 (intervention* OR support* OR program*)) OR AB ((Peer* OR lay OR social* OR group*) N2 (intervention* OR support* OR program*)) | 103,905 |
| #9 | TI ((meditat* OR “self-care”) N2 (intervention* OR support* OR program*)) OR AB ((meditat* OR “self-care”) N2 (intervention* OR support* OR program*)) | 2288 |
| #10 | MH Psychosocial Intervention+ OR MH Internet-Based Intervention+ OR MH Support, Psychosocial+, OR MH Patient Education+ OR MH Needs Assessment+ MH Mind Body Techniques+ | 82,741 |
| #11 | 5 or 6 or 7 or 8 or 9 or 10 | 254,667 |
| #12 | MH Adaptation, Psychological+ OR MH Emotional Regulation+ OR MH Social Adjustment+ OR MH Hardiness+ OR MH Life Change Events+ OR MH Quality of Life+ OR MH Psychological Well-Being OR MH Patient Preference | 264,871 |
| #13 | TI (reintegrat* OR “posttraumatic growth” OR “post traumatic growth” OR resilien* OR “new normal”) OR AB (reintegrat* OR “posttraumatic growth” OR “post traumatic growth” OR resilien* OR “new normal”) | 24,403 |
| #14 | TI ((psychological* OR emotion*) N2 (adjust* OR adapt*)) OR AB ((psychological* OR emotion*) N2 (adjust* OR adapt*)) | 4246 |
| #15 | 12 or 13 or 14 | 278,327 |
| #16 | 4 and 11 and 15 | 1437 |
| No limits selected. | ||
Embase
Search conducted: June 8, 2022
| Search | Query | Records retrieved |
|---|---|---|
| #1 | ((cancer*) NEAR/3 (survivor*)):ti,ab,kw | 34,471 |
| #2 | ‘cancer survivor’/exp/mj | 12,409 |
| #3 | ((beyond or after or ‘post treatment’) NEAR/3 (cancer* or oncolog*)):ti,ab,kw | 76,543 |
| #4 | 1 or 2 or 3 | 106,330 |
| #5 | ((education* or navigat* or information*) NEAR/2 (intervention* or support* or program*)):ti,ab,kw | 121,741 |
| #6 | ((internet or web* or online or app or ‘social media’ or texting or ‘text-based’) NEAR/2 (intervention* or support* or program*)):ti,ab,kw | 15,782 |
| #7 | ((psychosocial or ‘psycho social’) NEAR/2 (intervention* or support* or program*)):ti,ab,kw | 17,673 |
| #8 | ((Peer* or lay or social* or group*) NEAR/2 (intervention* or support* or program*)):ti,ab,kw | 175,054 |
| #9 | ((meditat* or ‘self-care’) NEAR/2 (intervention* or support* or program*)):ti,ab,kw | 2561 |
| #10 | ‘psychosocial intervention’/exp/mj OR ‘web-based intervention’/exp/mj OR ‘social support’/exp/mj OR ‘aftercare’/exp/mj OR ‘patient education’/exp/mj OR ‘needs assessment’/exp/mj OR ‘alternative medicine’/exp/mj OR ‘art therapy’/exp/mj OR ‘spiritual healing’/exp/mj | 151,196 |
| #11 | 5 or 6 or 7 or 8 or 9 or 10 | 463,333 |
| #12 | ‘psychological adjustment’/exp/mj OR ‘psychological resilience’/exp/mj OR ‘life event’/exp/mj OR ‘patient preference’/exp/mj OR ‘quality of life’/exp/mj | 138,864 |
| #13 | (reintegrat* or ‘posttraumatic growth’ or ‘post traumatic growth’ or resilien* or ‘new normal’):ti,ab,kw | 56,294 |
| #14 | ((psychosocial or ‘psycho social’) NEAR/2 (intervention* or support* or program*)):ti,ab,kw | 17,673 |
| #15 | 12 or 13 or 14 | 206,936 |
| #16 | 4 and 11 and 15 | 2192 |
| No limits selected. | ||
ProQuest Dissertations and Theses (ProQuest)
Search conducted: June 8, 2022
| Search | Query | Records retrieved |
|---|---|---|
| #1 | ti((cancer*) NEAR/3 (survivor*)) OR ab((cancer*) NEAR/3 (survivor*)) | 1734 |
| #2 | diskw.Exact(“Cancer survivors” OR “Cancer Survivors” OR “cancer survivors” OR “Survivor of cancer” OR “cancer survivorship” OR “Cancer survivor” OR “Cancer survivorship”) | 339 |
| 3 | ti((beyond OR after OR “post treatment”) NEAR/3 (cancer* OR oncolog*)) OR ab((beyond OR after OR “post treatment”) NEAR/3 (cancer* OR oncolog*)) | 1966 |
| #4 | 1 or 2 or 3 | 3442 |
| #5 | ti((education* OR navigat* OR information*) NEAR/2 (intervention* OR support* OR program*)) OR ab((education* OR navigat* OR information*) NEAR/2 (intervention* OR support* OR program*)) | 67,327 |
| #6 | ti((internet OR web* OR online OR app OR “social media” OR texting OR “text-based”) NEAR/2 (intervention* OR support* OR program*)) OR ab((internet OR web* OR online OR app OR “social media” OR texting OR “text-based”) NEAR/2 (intervention* OR support* OR program*)) | 7511 |
| #7 | ti((psychosocial OR “psycho social”) NEAR/2 (intervention* OR support* OR program*)) OR ab((psychosocial OR “psycho social”) NEAR/2 (intervention* OR support* OR program*)) | 1772 |
| #8 | ti((peer* OR lay OR social* OR group*) NEAR/2 (intervention* OR support* OR program*)) OR ab((peer* OR lay OR social* OR group*) NEAR/2 (intervention* OR support* OR program*)) | 62,967 |
| #9 | ti((meditat* OR “self-care”) NEAR/2 (intervention* OR support* OR program*)) OR ab((meditat* OR “self-care”) NEAR/2 (intervention* OR support* OR program*)) | 836 |
| #10 | diskw.Exact(“Psychosocial intervention” OR “psychosocial intervention” OR “Psychosocial interventions”) OR diskw.Exact(“Internet-based intervention” OR “Internet-based interventions”) OR diskw.Exact(“Psychosocial group support” OR “Psychosocial support” OR “Psychosocial support group”) OR diskw.Exact(“Patient education” OR “patient education” OR “Patient Education”) OR diskw.Exact(“needs assessment” OR “Needs-assessment” OR “Needs assessments” OR “Needs assessment” OR “Needs Assessment”) OR diskw.Exact(“Mind-body therapy”) | 576 |
| #11 | 5 or 6 or 7 or 8 or 9 or 10 | 131,810 |
| #12 | diskw.Exact(“Psychological adaptation” OR “Psychological adaptations” OR “Psychological Adaptation” OR “psychological adaptation”) OR diskw.Exact(“Emotional regulation” OR “Emotional Regulation” OR “Emotional Regulation” OR “Emotional regulation”) OR diskw.Exact(“social adjustment” OR “Social adjustment” OR “Social adjustment” OR “Social Adjustment” OR “Psychosocial adjustment”) OR diskw.Exact(“hardiness” OR “Hardiness”) OR diskw.Exact(“Life change events”) OR diskw.Exact(“Quality Of Life” OR “Quality of Life” OR “Quality of Life” OR “quality of life” OR “Quality of life”) OR diskw.Exact(“Psychological well-Being” OR “Psychological Well-being” OR “psychological well-being” OR “Psychological well-being” OR “Psychological well-being” OR “Psychological Well-Being”) OR diskw.Exact(“Patient preferences” OR “patient preferences” OR “Patient Preference” OR “Patient preference”) | 4114 |
| #13 | ti(reintegrat* OR “posttraumatic growth” OR “post traumatic growth” OR resilien* OR “new normal”) OR ab(reintegrat* OR “posttraumatic growth” OR “post traumatic growth” OR resilien* OR “new normal”) | 30,161 |
| #14 | ti((psychological* OR emotion*) NEAR/2 (adjust* OR adapt*)) OR ab((psychological* OR emotion*) NEAR/2 (adjust* OR adapt*)) | 4969 |
| #15 | 12 or 13 or 14 | 38,682 |
| #16 | 4 and 11 and 15 | 131 |
| No limits selected. | ||
Appendix II: Characteristics of included studies
| Author, year Country | Study design and aim | Population | Intervention based on psychosocial domain | Intervention setting | Intervention mode of delivery | Intervention components | Reintegration-related findings | ||
|---|---|---|---|---|---|---|---|---|---|
| Buki et al., 200831 US | Qualitative To examine the experiences of immigrant Latina breast cancer survivors along the survivorship continuum | N=18; 100% women Cancer type: breast Mean age: 51.2 years (range: 35–67 years) | Psychological Social | Unknown | Peer support | Peer-support group in the reentry phase | The peer-support group was discussed as being important to the reentry phase (ie, 1–3 years post-diagnosis and after treatment). Women were invested in moving on from diagnosis and treatment and toward survivorship. | ||
| Bulmer et al., 201268 US | Qualitative To describe women’s experiences with exercising during or after their breast cancer treatments | N=45; 100% women Cancer type: breast Mean age: 53.1 years (range: 32–64 years) | Physical Psychological Social | Primary care or community | Other: IMPACT coordinator had bachelor of science degree in exercise physiology and was certified as a clinical exercise specialist | The IMPACT exercise program. Participants were referred to a health club facility close to them and matched with a personal trainer. All trainers were certified Health Fitness Specialists by the American College of Sports Medicine. The program included group exercise classes, Pilates, aerobics, cycling, and circuit weight training. Participants and trainers met at least once per week during the first 3 months. Trainers designed/modified participant programs with consideration for a woman’s surgical history, treatment side effects, and fatigue. Participants were encouraged to complete a muscular fitness routine twice per week and engage in 30 minutes of moderate cardiovascular activity on their own most days. The program was flexible to participants’ needs. Participants had 6-month unlimited access to a health club facility and a set 12 ×1-hour personal training sessions. | Participants discussed the program in relation to helping them move forward and rebuilding and reclaiming their bodies. Women regarded post-treatment exercise as a means for revitalization, a way to get back in shape, restore functionality, and return to pre-cancer energy levels. They measured success by feeling normal again. One participant said, “I wanted to work a day and be able to come home and have energy and not be tired. I can do that now because of the exercise program.”(p.781) Exercise helped many women become more confident and adopt healthier lifestyles. | ||
| Butt, 201217 US | Mixed methods To test a psychoeducational group intervention, the Mid-Life Directions Workshop, for its effect on hope and quality of life in midlife cancer survivors | N=26; 88.5% women, 11.5% men Cancer type: breast (n=19), colorectal, skin, lung Mean age: 54.3 years (range: 40-65 years) Intervention group: N=17 Mean age: 55.6 years (SD: 7.3 years) Control group: N=9 Mean age: 51.9 years (SD: 6.2 years) | Physical Informational Psychological Spiritual | Hospital/ acute care | Multicomponent education programa | Intervention: The Mid-Life Directions Workshop, led by a researcher with 3-8 participants. A workbook was given to participants with session themes and activities. There were 6 ×2-hour sessions. They included education on psychological growth and development, guided imagery, music meditation, journaling, understanding personality types and values, creative listening, and sharing. Control: A nutrition program for survivors led by a research assistant, delivered in 6 × 1-hour sessions. Session topics and printed materials were taken from the American Cancer Society Nutrition and Physical Activity Guidelines. | Moving forward with enthusiasm was a major theme found among many workshop participants. While journaling, participants wrote about their openness to change, how they were using the new skills they had learned and wanting to live life fully. The workshop provided participants with an opportunity to adapt to the challenges of life after their cancer diagnosis and treatment by creating a new normal for themselves through person and environmental integration. One participant said, “The workshop has opened the door for me to realize that my cancer diagnosis is not an end to my dreams and desires, but a steppingstone to explore new opportunities and experiences that lie ahead of me…”(p.144) | ||
| Chamberlain Willmoth et al., 200669 US | Qualitative study post RCT To describe women’s perceptions of their emotional and interpersonal adaptations to breast cancer after their involvement in an RCT intervention | N=77; 100% women Cancer type: breast Intervention group: N=35 Mean age: 57 years Control group: N=43 Mean age: 59 years | Informational Emotional Social | Telephone | Clinician-led; paper-based education | Intervention: Telephone support from an oncology nurse, in addition to the same education materials as the control group Control: Educational materials via a mailed resource kit | Both groups (intervention and control) saw similar changes in involvement in activities (most increased or stayed the same, some decreased); women in the intervention group were more likely to say relationships with others improved. Both groups experienced life changes (outlook on life), although more participants in the control vs the intervention group reported that participation in the study improved their outlook toward life. | ||
| Chan et al., 201870 China | Qualitative To explore the essence of the psychosocial support provided in cancer support group organizations in the community from the perspective of cancer patients, cancer survivors, volunteers, and HCPs | N=39; 79.5% female, 20.5% male Cancer type: multiple (not specified) No mean age provided (range: 31–80 years) | Physical Informational Emotional Psychological Social Spiritual Practical | Primary care or community | Peer support; clinician-led; other: multiple components, activities such as relaxation, yoga, choir, education sessions, support groups | The Centre (a community cancer support center), which provided meditation, meetings with psychologists, support groups, psychoeducation, health talks, choir, yoga, and other activities | Participants reported the center helped them achieve mental well-being (coming to terms with illness and accepting it), access a support network (those with similar situations), embrace vulnerability, deal with uncertainty, increase health literacy, regain confidence through active self-learning (developing new social network, participating in activities), and see more value in themselves (self-renewal, new life, rebirth, actualizing their potential). One participant said, “My life and my views are now completely different from before… [This is a] fresh start.”(p.45) | ||
| Connerty and Knott, 201338 Australia | Qualitative To explore the experience of survivorship with an emphasis on identifying factors that may impact the development of post-traumatic growth | N=15; 47% women, 53% men Cancer type: breast (n=3), blood, colorectal, genitourinary, skin, head and neck, brain Mean age: 63.5 years (SD: 11.6 years) | Informational Social | Primary care or community | Peer-support and education programs | Peer-support intervention: The Cancer Voices advocacy/support group Education program: The Staying Healthy After Cancer course | Participants reported support groups facilitated adaptation and positive change, and education programs facilitated finding meaning and regaining personal control over life again. Support that was provided by these groups fostered a deeper understanding of the cancer experience. Due to supportive relationships and support groups, many survivors were able to adapt to and process their experience, which participants suggested led to positive change. | ||
| Dieperink et al., 201339 Denmark | Qualitative To explore participants’ experiences of treatment with radiotherapy and androgen therapy, participation in a rehabilitation program, and to explore participants’ thoughts on spousal involvement in the rehabilitation process | N=13; 100% men Cancer type: prostate Mean age: 71 years (range: 66–77 years) | Physical Informational Emotional Psychological Social Spiritual Practical | Unknown | Other: multidisciplinary rehabilitation program | The rehabilitation program (RePCa) included 2 sessions with a nurse and 2 sessions with a physiotherapist. It was recommended that patients be accompanied by their spouse, though some participants went alone. The nursing sessions were based on the philosophy of Patricia Benner. The nurse identified problems important for the patient, and provided psychosocial support, and the opportunity of counseling regarding, for example, toilet habits, smoking cessation, weight control, sexuality, and psychological problems. Referral to other providers (eg, doctors, sexologists, social workers) were made as needed. The physiotherapy sessions contained instructions on pelvic floor exercise and physical exercise. Motivational interviewing was a communicative platform used by nurses and physiotherapists. | The rehabilitation program helped men cope with everyday life. Most men did the same things as before, but adapted their life to the frequent bathroom visits. One truck driver, using pelvic floor exercises, learned to hold back until the next highway pullover. Others modified their lifestyles. Advice from health professionals helped men sustain everyday life (dealing with adverse effects). One participant said, “The rehabilitation gave the men a sense of security during the change to everyday life.”(p.554) | ||
| Dunn et al., 200940 Australia | Qualitative To investigate women’s experiences in the Amazon Heart challenge motorcycle event, including positive and negative adjustment before and after the ride | N=21; 100% women Cancer type: breast Mean age: 45.1 years (range: 38-56 years) | Emotional Psychological Social Spiritual | Primary care or community | Peer support; other: motorcycle ride | The Challenge Event: A 7-day motorcycle ride through Australia with a focus on peer support. Training was provided along with instructions to journal throughout the intervention. | The ride was a catalyst for change (ie, positive perspective shift, sense of closure, personal change and/or growth); 6 months after the ride, women reported positive effects with regard to new friendships and, for some, a feeling of having moved on from their breast cancer experience. One participant said, “I have a better sense of closure and it fulfilled my need for self-expression.” (p.129) | ||
| Ferri et al., 202141 Australia | Qualitative To explore the benefits, challenges, barriers, and facilitators experienced by people with cancer and cancer survivors who participated in a physiotherapy-led, hospital-based exercise program | N=15; 66% female, 33% male Cancer type: breast (n=10), prostate, head and neck Program completers: N=11; 64% female, 26% male Mean age: 57 years (SD: 8 years) Program non-completers: N=4; 75% female, 25% male Mean age: 56 years (SD: 12 years) | Physical Social Practical | Hospital/acute care | Clinician-led; other: exercise program | Exercises were prescribed in accordance with the 2010 American College of Sports Medicine guidelines, including a variety of aerobic and resistance exercise stations. Classes were held with a maximum of 8 participants, supervised by 2 physiotherapists. Classes were held once a week for 12 weeks or twice a week for 6 weeks. | The program helped participants reconnect with others, prepare to go back to the real world, instill a sense of normality, and create life after cancer. However, they did worry about the ability to continue these changes (mainly in terms of fitting in exercise) after the program. One participant said, “I definitely was in a better mood…even my partner that I live with and my son, they were like, ‘Oh, she’s coming back’.”(p.1579) | ||
| Hauken et al., 201418 Norway | Mixed methods To examine whether a goal-oriented rehabilitation program increased young adult cancer survivors’ participation (in everyday living), and explore participants’ descriptions and experiences of the goal-oriented process | N=16; 75% female, 25% male Cancer type: breast (n=3), blood, colorectal, testicular, sarcoma, gynecologic Mean age: 30.8 years (range: 25-35 years) | Physical Informational Emotional Psychological Social Practical | Primary care or community | Peer support; clinician-led; other: there are multiple components in this rehab program. All personalized to each individual’s issues/goals (multidisciplinary rehabiliation program) | A goal-oriented rehabilitation program conducted by an interdisciplinary specialist team. Included peer support (eg, living, exercising, and training together), individual follow-up (eg, with rehabilitation medicine, physiotherapists, nurses, nutritionists, social workers), psychoeducation (7 training and discussion sessions about cancer survivorship), and physical activity (ie, programs with 2 or 3 sessions 45 minute every day). The activity varied between individual workout programs and group sessions, where at least 1 was outdoor walking, climbing, or sea sports. There was a next of kin weekend where the next of kin was allowed to visit participants, and 2 training sessions on coping, 1 rehabilitation program session, and 1 session on diet and nutrition were held. The program included 3 weeks of residential rehabilitation and 1-week follow-up visits after 3 and 6 months. | The Canadian Occupational Performance Measure was used, which identities everyday issues that restrict participation in everyday living, including self-care, leisure, and productivity. At timeframe 4, 14 of the participants reported an improvement of performance, and all reported improvement in satisfaction. Work and study participation status increased between timeframe 1 and 4. Setting goals gave them feelings of continuity, motivation, and responsibility for their own rehabilitation process. The participants indicated that their participation had increased in all areas of life by the end of the program. Most participants had goals related to physical activity, building capacity, and distributing their energy for everyday life because of fatigue. Many participants seemed to find that structuring their everyday life, acknowledging the equal importance of the different areas, and facilitation and cooperation with their employer or college/university, were keys to finding balance in life. Meeting others was highly related to sharing experiences, finding a new normal, and supporting one another to increase participation in different areas of life. Participants also learned to live under new conditions and re-evaluated study or work capacity. One participant said, “It’s incredibly sad to think that I cannot cope (with studies). Thus, I can do some things, but other things are difficult. I understood that I cannot get it all. I am reduced, so if I want to have a life, I have to adjust myself to the fact that I will not get healthy very soon and perhaps accept that I will not complete my studies.” (p.E55) The higher correlation between performance and satisfaction at timeframe 4 than at timeframe 1 seems to support the qualitative finding of gaining new insight. | ||
| Hefferon et al., 200843 UK | Qualitative To explore the experience of post-traumatic growth among patients with breast cancer and the role, if any, that a group-based, physical activity intervention had in the attainment of growth | N=10; 100% women Cancer type: breast Age: 50% 43-53 years; 50% 53-63 years | Physical Psychological Practical | Primary care or community and home | Other: exercise program | The exercise program ran for 12 weeks; participants were encouraged to attend 2 classes and do 1 additional exercise session at home each week. Exercise classes were led by trained exercise specialists. They took place in 8 community exercise facilities accessible by public transport. Classes were 45 minutes total and ranged from walking, cycling, low-level aerobics, muscle strengthening exercises, or circuits of specifically tailored exercises. Participants were monitored to ensure exercise at a moderate level. Each week, for 6 weeks, a theme was covered in group discussion after the exercise (eg, the health benefits of exercise, enhancing self-efficacy, setting goals) and supported with specifically constructed materials. The themes were guided by a model of behavior change and were designed to promote independent exercise after the intervention. At the end of the 12-week intervention, the participants were helped to construct an individual exercise program and invited to join an exercise referral scheme. | The exercise classes had a unique ability to enhance women’s confidence levels and transfer new confidence levels to the real world (transference of skills). Physically and mentally, women gained courage, belief, and mastery over their bodies. Classes increased their confidence to return to work, face the public without a wig, and continue exercising. One participant said, “…Just it gave you the confidence. Because, we, we would get hot doing our exercises, and take the wig off [yes]. And, I think, that helped you to…take the wig off earlier than you would have done. I, I was conscious of it, and I did have to be sort of pushed into, you know, going out without a wee bit at first, but it was because of the exercise classes that definitely, because that was you going out… with other people, very early on. And… not bothering. So then that gives you a wee bit of confidence to go somewhere else and not bother…”(p.37) | ||
| Hershman et al., 201344 US | RCT To evaluate the effect of an in-person survivorship intervention following adjuvant breast cancer therapy on health worry, treatment satisfaction, and the impact of cancer | N=126; 100% women Cancer type: breast Intervention group: N=66 Mean age: 53.7 years (SD: 12.1 years) Control group: N=60 Mean age: 54.9 years (SD: 10.9 years) | Physical Informational Emotional Psychological Social Practical | Unknown | Clinician-led; paper-based education; multicomponent education programa | Intervention: In addition to being given the same Facing Forward publication as the control group, they met for 1 hour with a nurse practitioner and a nutritionist (in English or Spanish) to receive a personalized treatment summary, surveillance recommendations, discussion of risk for late effects and toxicities, and screening and lifestyle recommendations. Content was based on guidelines from the American Society of Clinical Oncology. Control: The National Cancer Institute publication, Facing Forward: Life after Cancer. Facing Forward is a guide for people who were treated for cancer. It is a 24-page manual, available in English and Spanish, that summarizes many key issues of interest to cancer survivors during the reentry phase. | The 81-item Impact of Cancer scale was used to measure unique and multidimensional aspects of long-term cancer survivorship. This instrument focuses almost exclusively on problems, issues, and changes that long-term survivors ascribe to their cancer experience. This outcome measure relates to reintegration, as it has a social domain, which includes items such as impact on activities, relationships, interference with life, making plans, etc. There was no significant change from baseline in either group in terms of the Impact of Cancer scale. In summary, no short-term benefit of an in-person personalized survivorship intervention, as opposed to the provided publication, was found. | ||
| İnan and Üstün, 201842 Turkey | Qualitative To explore breast cancer survivors’ life experiences and perceptions about participating in a psychoeducational intervention aimed at reducing psychological distress and improving quality of life | N=32; 100% female Cancer type: breast Mean age: 53.7 years | Informational Emotional Psychological Social | Home | Multicomponent education programa | A psychoeducational personalized intervention. There were 4 sessions, each 60-90 minutes. Survivors identified a major problem. Following assessment, psychoeducation focusing on the problem was offered, along with videos and written materials in each session. Researchers created a psychoeducation booklet for participants based on relevant literature. It included information about changes experienced in the post-treatment period and guidance for overcoming common problems that arose in that period. | The intervention encouraged participants to do things they were postponing, reorganize life, try new things, change priorities, and go out and be more social. One participant said, “I started to do things which I thought I could never do. You gave me the courage to take action.”(p.39) Another said, “I had many opportunities to confront my life during the intervention and it continued after the intervention. My view of life and priorities have changed.”(p.39) | ||
| Ireland et al., 201945 UK | Mixed methods To understand the perceived benefits of the Best Foot Forward program through the experiences of volunteers, walk leaders, and walkers affected by breast cancer | Cancer type: breast Age range: 31-90 years Walk leader respondents: N=13; 92.3% women, 7.7% men Walkers surveyed: N=57; 100% women Respondents: N=35, 100% women | Physical Emotional Psychological Social | Primary care or community | Peer support; other: Best Foot Forward volunteer-led walking group | Best Foot Forward walks were led by volunteer walk leaders who had experience of breast cancer diagnosis and treatment (personally or through family/friend relations). Walk leaders were recruited from the Moving Forward program and were involved in the design and risk assessment of walk routes in conjunction with Breast Cancer Care staff. Each walk was designed to suit people of all abilities and fitness levels and to originate from a location that was easily accessible, such as a local park. Walks were facilitated by 2 walk leaders: 1 to lead the group, and 1 to monitor the group’s progress. Walks lasted between 30 and 60 minutes and concluded in a local cafe to encourage therapeutic conversation. | The intervention acted as a starting point for the things participants wanted to do by reengaging with physical activity after cancer. It allowed them to commence life after cancer, provided a sense of normality, and a served as a symbol of starting a new life. Walking was often used as a metaphor for moving on in the cancer journey, and taking part in walks was described as an important way to start the transition from being a patient to becoming a person again. | ||
| Jiwa et al., 201046 Australia | Qualitative To report a thematic analysis of the consultations between specialist breast cancer nurses and patients | N=21; 100% women Cancer type: breast Mean age: 61.8 years (range: 44-84 years) | Informational Emotional Psychological Social Practical | Hospital/ acute care | Clinician-led; other: nurse-led follow-up visit | Specialist breast cancer nurses provided follow-up care visits. Their supportive role was 5-fold: normalizing, facilitating access to services, prevention, promoting self-esteem, and promoting a proactive approach. Specialist breast cancer nurses are involved with patients from first presentation and annually until they are discharged from the clinic at 3 and 5 years, if no recurrence. | Overall, the specialist breast cancer nurses played an important role in facilitating the transition of patients by supporting the woman in adjustment to a new self-image and bodily functioning. They accompanied each woman through this phase in her life, while supporting a new narrative; promoting her rebirth, as someone with ideas, concerns, and expectations that altered significantly after the diagnosis of cancer. | ||
| Khan et al., 201247 Australia | RCT To assess the effectiveness of a multidisciplinary ambulatory rehabilitation program for women following breast cancer treatment | N=85; 100% women Cancer type: breast Median age: 57 years (25th percentile: 47.4 years, 75th percentile: 63.9 years) Intervention group: N=43 Control group: N=42 | Physical Informational Emotional Psychological Social Practical | Hospital/acute care | Clinician-led; other: intensive rehabilitation at a center with multidisciplinary teams and multiple therapies depending on needs (physiotherapy, occupational therapy task re-acquisition strategies, return to work, etc.) | Intervention: The intensive rehabilitation intervention included treatment beyond symptomatic management of cancer. It included education to improve activity and participation within the limits of disease. The elements included individualized, achievable, time-based, functional, goal-oriented medical doctor treatment with active patient participation. The methods used included, for example, physiotherapy for shoulder range of movement, strengthening, lymphoedema care; occupational therapy for energy conservation and task re-acquisition strategies to improve everyday function (domestic, community tasks), lymphoedema care, driving and return to work; and clinical psychology for counseling, coping strategies and support as required. Participants had up to 3 ×1-hour sessions of interrupted therapy per week, involving all relevant disciplines based on participant need and team consensus. This comprised half-hour blocks of therapy sessions (social, psychology, occupational, and physiotherapy), 2-3 times per week for up to 8 weeks. Control: Usual activity | The Perceived Impact Problem Profile measured changes in reintegration outcomes in 5 domains by assessing how cancer impacts the ability to do certain things: psychological (live independently), self-care (wash self, dress self, etc.), mobility (drive, move around house, etc.), participation (assist family members, family activities, community activities, work), relationship (with friends, neighbors, relatives, etc.). Significant differences (between treatment and control groups) were detected for the Perceived Impact Problem Profile mobility and participation scales. This study provides some evidence to support rehabilitation for improved participation of breast cancer survivors in the community. | ||
| Kristensen et al., 201919 Denmark | Qualitative To explore head and neck cancer survivors’ experiences of everyday life with eating problems after cancer treatment and to explore their experiences of participating in a multidisciplinary residential rehabilitation program | N=40; 50% female, 50% male Cancer type: head and neck Mean age: 61 years (range: 39-80 years) | Physical Informational Emotional Psychological Social Practical | Primary care or community | Clinician-led; other: the multidisciplinary residential rehabilitation program was a coordinated effort involving several specialists (eg, clinical dietitians, nurses, physiotherapists, psychologists, and social workers) | The multidisciplinary residential rehabilitation program included sessions and activities related to the physical, psychological, and social aspects of eating problems. There were group and individual sessions with a clinical dietitian. A practical kitchen workshop was included to inspire participants, and take-home recipes were handed out. An occupational therapist instructed participants in swallowing exercises and exercises for jaw and tongue mobility. A group session with a dental hygienist on oral hygiene and dental reimbursement rules was included. Participants stayed at the premises and all meals throughout the day were served on site. At all meals, foods were of different textures and flavors to experiment with different foods than participants usually ate. Meals were also intended as social training. There were also sessions for general physical activity (eg, yoga, session on fatigue), a group session with psychologist on psychological consequences of cancer, a group conversation with a priest on existence, massage therapy, and a session on intimacy and sexuality. Furthermore, participants could have individual counseling sessions with relevant professionals (eg, physician, social worker), depending on individual needs. On the last day, sessions on motivation and action plans were included to allow participants to reflect on how they wanted to use the new inspiration and knowledge in their everyday life when they returned home. The program was offered 3 times (2013, 2014, 2018). Each of the 3 programs had a maximum of 20 participants. The program was free of charge for participants. It was 5 days with 2 days of follow-up. | The program had a focus on the specific problem as well as on the whole person (knowledge and skills to cope with everyday life after treatment were gained). One participant said, “I also think I feel a development in myself, and I also see it among all the others. From last time, we were here and until now, we eat, we are actually seeking out new experiences. We will try this and that because, previously, we would not dream of eating it, but we can just try. No harm is done by trying.”(p.796) | ||
| Kvale et al., 201648 US | RCT To examine the effect of the POSTCARE intervention on patient outcomes and care coordination | N=79; 100% female Cancer type: breast Mean age: 58.4 years (range: 37-83 years) Intervention group: N=40 Mean age: 57.2 years (SD: 9.2 years) Control group: N=39 Mean age: 59.5 years (SD: 12.0 years) | Physical Informational Psychological Social Practical | Unknown | Other: enhanced post-treatment follow-up/SCP led by coaches | Intervention: The POSTCARE intervention was a single coaching encounter (mean 75 minutes, ranging from 31-126 minutes) that utilized motivational interviewing techniques to engage patients in the development of a patient-owned SCP that incorporated health goals and strategies related to cancer follow-up, surveillance, symptom management, and health behavior. It was delivered by master’s-level mental health professionals who completed motivational interview training. Control: Usual care. During the study period, routine care did not include provision of a standardized treatment summary or a SCP. | The Social/Role Activities Limitations scale measured how illness impacted normal activities with family, friends, neighbors or groups; recreational activities or hobbies; housework; and running errands. Participants in the intervention vs usual care group demonstrated lower social role limitation. The assessment of limitation in social roles and activities showed significant group differences in change scores between baseline and 3-month follow-up. | ||
| Livsey and Lewis, 201849 UK | Systematic review To identify, analyze, and summarize qualitative literature findings, which have explored breast cancer survivors’ experiences of participating in an exercise intervention after cancer treatment | N=6 included studies The sample size of the included qualitative studies ranged from 9-25 participants. Ranged from 66-100% female. Cancer type: breast, also included prostate and other cancer types but quotes used in review were only from breast cancer patients. Articles were excluded if they focused solely on any health conditions other than breast cancer. Age range: 32-90 years | Physical Psychological Social Practical | Unknown | Other: all interventions were exercise-based programs | The review described a few relevant interventions. One was a lifestyle intervention aimed at weight loss, an individualized, structured exercise program (IMPACT). Another was a Mindful Movement Program, a tailored exercise program including an 8-week exercise plan and a counseling intervention. Also, the Copenhagen Physical Activity after Cancer Treatment Study. | Many women expressed a desire to regain a sense of normality in their lives. Because of the cancer diagnosis and its treatment, many of the women felt that normality was lacking in their lives, particularly in social interactions. Women expressed that the exercise intervention helped them to regain a sense of normality. Participation in the exercise intervention was described as a way to move forward and beyond the cancer experience. | ||
| Loh et al., 201150 Malaysia | Follow-up questionnaire to an RCT To evaluate the quality of life of women 2 years after participating in a self-management intervention program | N=51; 100% women Cancer type: breast Mean age: 54 years (range: 28-71 years) Intervention group: N=32 Mean age: 53 years (SD: 7 years) Control group: N= 19 Mean age: 55 years (SD: 10 years) | Informational Emotional Practical | Unknown | Clinician-led; multicomponent education programa | Intervention: Stay Abreast Move Ahead 4-week program. The program aimed to enable patients with information and skills to stay abreast of the demands of managing the illness, and to facilitate moving ahead by engaging proactive coping and healthful behaviors. The development of the program was based on literature suggesting the main barriers to self-management in Malaysian women with breast cancer were lack of available of information, inability to access services and supports, as well as other factors such as the socioeconomic-cultural issues (entrenched myths, low socioeconomic status, and inadequate insurance-health legislative coverage). The program was moderated by HCPs. Control: Usual care | The Perceived Impact Problem Profile scale was used. There were significant differences between groups in psychological, self-care, mobility, and participation scales, with the experimental group having lower scores in all domains of the Perceived Impact Problem Profile (meaning they perceived the illness to have less of an impact on their lives). Compared to the control group, the intervention group expressed significantly higher confidence level in managing activities of daily living. The 4-week Stay Abreast Move Ahead program provided knowledge and skills for women to self-manage an active and emotionally satisfying life in the face of living with breast cancer. The experimental group perceived less negative impact from their health condition on the psychological, self-care, mobility, and participation levels. On the other hand, the control group experienced higher level of physical and psychological distress, as well as activity impairment, compared with the experimental group, although the difference was not statistically significant. Women from the experimental group also reported having significantly higher confidence to manage living with breast cancer. | ||
| McDonough et al., 201933 Canada | Qualitative To examine survivors’ reasons for joining and maintaining participation on a dragon boat team, along with perceptions of barriers and attractions to traditional peer-support groups | N=17; 100% women Cancer type: breast Mean age: 51.2 years (SD: 11.1 years) | Physical Emotional Psychological Social | Primary care or community | Peer support; other: dragon boating | Dragon boat racing; participants were interviewed over their first 2 seasons. | Dragon boating helped participants with moving on, regaining agency, and getting life back after cancer. Participants also discussed the benefit of dragon boating over traditional peer support. One participant said, “…This [dragon boating] gives you a focus that, yes, we are all breast cancer survivors, we are all, you know, subject to the same fears and concerns and all that, but we are also, we are doing something about it. We are not sitting back and letting it take us over.” (p.1792) | ||
| Mitchell and Nielsen, 200251 Canada | Qualitative To describe the experience, meaning, and psychosocial impact of dragon boating on women with breast cancer | N=6; 100% female Cancer type: breast Mean age not provided (range: 43-75 years) | Physical Emotional Psychological Social | Primary care or community | Peer support; other: dragon boating | Dragon boating | Dragon boating allows a physical and social environment that increasingly enables women to focus on life and living rather than breast cancer. One participant said, “Dragon boating has given me the opportunity to regain control in my life, to feel strong again. To be able to do things, to be able to feel that sense of aliveness.” (p.54) | ||
| Mitchell et al., 200752 Canada | Qualitative To investigate the psychosocial impact of dragon boat participation on women who have been treated for breast cancer | N=10; 100% women Cancer type: breast No mean age provided (range: 35-70 years) | Physical Emotional Psychological Social | Primary care or community | Peer support; other: dragon boating | Dragon boating; participants were in their first season of dragon boating. | Dragon boating helped participants experience an awakening of the self, and focus on personal goals and the pursuit of health. | ||
| Morris et al., 201132 Australia, US | Qualitative To understand the lived experience of breast cancer survivors participating in a peer-support program based on a challenge event | N=37; 100% women Cancer type: breast Mean age: 49.8 years (SD: 7 years) | Physical Emotional Psychological Social | Primary care or community | Peer support; other: motorcycle ride event and online discussion group | Amazon Heart Thunder, a peer-support challenge. A 10-day motorcycle ride (over 1000 miles) with other breast cancer survivors, including online discussion groups (established 6 months prior to riding). There were 2 Amazon Heart Thunder leaders who were breast cancer survivors themselves who also participated in the discussion group. Women committed to raising AU$1500 in donations for breast cancer causes. Two days prior to the ride, participants met to discuss the nature of the event, their expectations of the ride, and to share their experiences. This preparation also gave women time to practice riding their loan Harley-Davidson motorcycles. | Amazon Heart Thunder facilitated a shift in self-perception and changes in identity, and served as a catalyst for personal growth and positive life changes for participants. The predominant themes reported in the study showed a newfound sense of personal strength and re-prioritization of life priorities to include time for self-nurturing and fun. Participants reported that their newfound sense of personal strength gained during Amazon Heart Thunder continued after the ride was over, stating that positive life changes were evident once they returned home. | ||
| Murphy et al., 201953 US | Mixed methods To determine the influence of an equine-facilitated survivorship program on emotional distress and quality of life, and to explore the experiences of the participants for better understanding of program outcomes | N=4; 100% women Cancer type: not specified Mean age: 62 years (range: 55-71 years) | Physical Emotional Psychological Social Spiritual | Primary care or community | Other: therapeutic horseback riding program | The Healing with Horses Program, an equine-facilitated survivorship program was developed and implemented by equine specialists and a licensed oncology social worker. The program, located in the southeastern US, followed standards of the Professional Association for Therapeutic Horsemanship International. The 10-week program for adults diagnosed with cancer who completed initial rounds of traditional therapies included equine-facilitated psychotherapy. Each week, horsemanship activities were followed by 1 hour of therapeutic discussion facilitated by the oncology social worker, with therapeutic goals matched to the equine activities. | The intervention led to reclaiming positive emotions, moving beyond negative emotions, newfound resilience, and evolution of a new identity (self-identity, social identity, emotional freedom), changing roles with family and friends, participation in enjoyable activities, and positive life changes. The social identity phase moved from inward reflection to connections with others, including an acceptance of changing roles with family and friends. Participants described feeling more confident in social situations and an acceptance of imperfect relationships. In addition, they all expressed a desire to find a way to contribute to others, seek volunteer opportunities, or give back to their community. | ||
| Nahm et al., 201954 US | Pre/post-test To evaluate the preliminary effects of an interactive electronic Cancer Survivorship Patient Engagement Toolkit | N=30; 76% female, 23% male Cancer type: breast (n=15) and other not specified Mean age: 56.5 years (range: 29-81 years) | Physical Informational Emotional Psychological Social Spiritual Practical | Online | Navigation; e-health (eg, app, website); clinician-led; multicomponent education programa | The Cancer Survivorship Patient Engagement Toolkit, a 3-month program to deliver SCPs with supportive resources and a continued communication mechanism between the patient and health care team. The program included SCPs, biweekly follow-up using patient portal e-messages, and online survivorship resources (Well Beyond Cancer). Well Beyond Cancer is an online resource program with 6 sessions, including learning modules using videos with accompanying moderated discussion forums and optional virtual libraries. Discussions were moderated by a nurse coordinator. | The Impact of Cancer scale was used; no statistically significant changes in the Impact of Cancer were found between baseline and 3 months. Participants were also asked about their perception of the program’s usefulness. One participant said, “The plan helped me move from treatment to living in the present. I was stuck in the cancer mode and the plan enabled me to see a future in survivorship. It helped me plan and set realistic goals.” (p.579) | ||
| Nicks et al., 201955 US | Mixed methods To explore the role of peer support in the breast cancer experiences of African American survivors | N=24; 100% women Cancer type: breast Intervention group: N=12 Mean age: 63.6 years (SD: 12 years) Control group: N=12 Mean age: 65.6 years (SD: 11.3 years) | Informational Emotional Psychological Social Spiritual Practical | Primary care or community | Peer support | Intervention: The Breakfast Club, an African American breast cancer survivor-led community-based support organization. Monthly support group meetings, 1-on-1 support. Members serve as Breast Health Buddies to African American breast cancer patients, and to women at risk of developing breast cancer. Control: No peer support | This study reported that those in the Breakfast Club had an easier time adjusting to breast cancer survivorship compared with the control group. One participant said, “I still have anxiety. I still worry. My life will never be the same again, but it should not be because I have a testimony. I beat some odds‚ my life really should not be the same. I’ll keep dealing with things, I’m just looking forward to my new normal…”(p.362) | ||
| Parry, 200756 Canada | Qualitative To understand the role dragon boat racing plays in health and well-being throughout breast cancer survivorship | N=12; 92% female, 0.8% male Cancer type: breast Age range: mid-40s-early 60s | Physical Emotional Psychological Social | Primary care or community | Peer support; other: dragon boating | Dragon boating; some participants were in their first or second season of dragon boat racing, while others had been involved for a number of years. | Dragon boating helped participants create a new life, take back control, and face the unexpected. One participant said, “I could not go back to the way things were, but I still had to build a new life that suited the new me. It was difficult and it did not always feel right, because it was so new. Dragon boat racing helped tremendously. It became part of my new identity. The women I met through dragon boat racing understood my new mindset. The four hours a week I spent dragon boating was a reprieve for me. The women made me feel normal and helped me realize I could cope with what my life had to offer. My new friends helped me realize I was not a bad or weird person for what I was experiencing. They gave me the reassurance and strength to carry on with life and to create my new life.” (p.60) | ||
| Parry, 200857 Canada | Qualitative To understand how participation in dragon boat racing contributes to women’s health throughout their lived experiences with survivorship | N=11; 100% women Cancer type: breast Age range: mid-40s-early 60s | Physical Emotional Psychological Social | Primary care or community | Peer support; other: dragon boating | Same intervention as Parry,56 2007 | Dragon boat racing helped participants get back to feeling normal, recover, and enjoy life after breast cancer. One participant said, “Through my involvement in dragon boat racing, I demonstrate an example of not just being a survivor, but a thriver.”(p.231) | ||
| Pistrang et al., 201258 UK | Qualitative To understand the subjective experience of receiving telephone peer support for women with gynecologic cancer | N=24; 100% women Cancer type: gynecologic Mean age: 49 years (range: 27-75 years) | Informational Emotional Psychological Social Practical | Telephone | Peer support | A 3-month peer-support program (Women Helping Women). Peer supporters, who had completed treatment (a minimum of 1 year prior to the study) for gynecologic cancer, called patients who were receiving gynecologic cancer treatment. Weekly calls were recommended, though they ranged from 2-13 over a period of up to 3 months. All peer supporters attended a 2-hour orientation session. Supporters called patients and were given phone cards to cover their costs and also protect their privacy (by not revealing their phone number). Patients and peer supporters were matched as much as possible on the basis of diagnosis and treatment, age and family status, and preferences specified by the patient. After each call, supporters completed a telephone record sheet‚ documenting the length of call, topics discussed, and any concerns they had; this was sent (by email or post) to a designated member of the project team. If the telephone record sheet signaled any cause for concern, from the perspective of either the supporter or the project team, consultation was provided via telephone or email. | Participants expressed the program helped them rebuild their lives, transition from patient to survivor, and get back on track. One participant said, “I’d come off the phone and think, oh yeah, I am getting myself back on track‚ and even [husband] started saying, you are more like your normal self, you are planning, you are going out more, you are doing things.”(p.1086) | ||
| Pistrang et al., 201359 UK | Qualitative To understand the subjective experience of receiving telephone peer support for women with gynecologic cancer | N=16; 100% women Cancer type: gynecologic Mean age: 50 years (range: 26-69 years) | Informational Emotional Psychological Social Practical | Telephone | Peer support | Same intervention as Pistrang et al.,58 2012 | Although peer supporters had been out of treatment for an average of nearly 3 years and felt ready to take on the role, they were still engaged in the process of making sense of their experiences and developing a post-cancer sense of self. Participants discussed the program helped them on their survivor journey to continue to move on, get closure, and close a door. One participant said, “I think it allowed me to take a step back from my own situation. So, instead of being the patient, you know, full-time, it allowed me to kind of look at my own experience in a more objective way…It does remind you of how difficult it was and how far you’ve come…you are sort of morphing your own experience into something else, I suppose. It has sort of started to change my perception of my own experience into a more healthy one.”(p.889) | ||
| Sabiston et al., 200760 Canada | Qualitative To explore breast cancer survivors’ experiences of participation, motivation, social support, and physical self-perceptions related to their participation in dragon boating programs | N=20; 100% women Cancer type: breast Mean age: 58.7 years (range: 42-70 years) | Physical Emotional Psychological Social | Primary care or community | Peer support; other: dragon boating | Dragon boating; participants were in at least their second year of dragon boating (range 2-8 seasons). | Dragon boat racing helped participants feel like they were in control and working for something on the other side of treatment. It also fostered transformation, new roles and identities, new opportunities for psychological growth, and changes in life (including in relationships, employment, health behaviors). Some participants mentioned the benefit of dragon boating over traditional support groups. One participant said, “Some of these other support groups are just sort of all sat around and say how terrible it was that [name] had died. Well, we all think that but at the same time we are getting on with living…”(p.426) | ||
| Schumacher and McNiel, 201861 US | Mixed methods To determine the clinical significance of pre- and post-exercise rehabilitation on physical and psychosocial outcomes of the Livestrong at the YMCA program | Psychosocial measures: N=68 Physical measures: N=158 Qualitative: N=11 (54% women, 45% men) Cancer type: breast (n= unknown/not specified), blood, colorectal, prostate, renal, skin, gynecologic, thyroid, bile duct Age range: 35-74 years | Physical Emotional Social | Primary care or community | Other: exercise rehabilitation program | The Livestrong program, an exercise rehabilitation program put on by the YMCA in partnership with the Livestrong Foundation. Trained professionals led group-based activities with individualized exercise prescriptions that focused on cardiovascular conditioning, strength training, balance, and flexibility. There were no fees for participants. The 12-week program took place twice weekly, with sessions lasting about 75 minutes. | Participants discussed that the program helped them move on, get back on track, come back to life, and foster physical and mental changes. One participant said, “I was kind of emotionally scarred from treatment, and it helped me realize that and move on.”(p.721) | ||
| Semple et al., 200962 UK | Quasi-experimental To evaluate the effectiveness of a problem-focused intervention for patients with psychosocial dysfunction who completed treatment for head and neck cancer | N=54 Cancer type: head and neck Intervention group: N=25, 28% female, 72% male No mean age provided (range: 31-45 years) Control group: N=29, 24% female, 76% male No mean age provided (range: 31-45 years) | Physical Informational Psychological Social Practical | Home | Clinician-led; multicomponent education programa; other: tailored support to the participants’ needs, including referral for follow-up support | Intervention: A home visit was organized for an in-depth psychosocial assessment, and specific problems following treatment for head and neck cancer were identified, discussed, and prioritized. Collaboratively, an agreement was reached that a maximum of 3 problems, from a list of 8 problem-focused areas (ie, anxiety, depression, eating and drinking, fatigue, appearance, speech, smoking cessation, and finance), were addressed during the intervention. The 8 problem-focused areas were identified from previous research and clinical expertise. Participants were provided with an educational text, Managing Your Cancer Concerns. At the end of each session, participants were assigned homework. A referral pathway for follow-up support was established before patient recruitment, where a consultant psycho-oncologist would provide additional therapy, if required, at the end of the intervention. Participants took part in a minimum of 2 sessions and a maximum of 6 sessions (average 4). Sessions lasted 30 minutes and occurred every 2 weeks. Control: Usual care (ie, ongoing review at the multidisciplinary head and neck outpatient clinic and involvement as appropriate, with members of the head and neck cancer team [clinical nurse specialist, dietitian, speech and language therapist]). | Social adjustment/impairment was measured using the Work and Social Adjustment scale: a 5-item, self-report scale of social impairment, which assesses day-to-day domains. These include work, home management, social leisure, private leisure, and interpersonal relationships attributable to an identified problem, such as head and neck cancer. Participants rated each question on a scale from 0 (no impairment at all) to 8 (very severe impairment). A score of >20 implies moderate to severe social impairment, 10-20 indicates significant functional impairment and <10 denotes sub-clinical disease. At the beginning of the study, there were no differences between the 2 groups on the Work and Social Adjustment scale. After the intervention, there was a statistically significant difference, with the intervention having a positive result on social impairment. Social impairment decreased from 13.94 to 8.70 in the intervention group, and from 13.47 to 12.08 in the control group. This means that the intervention lessened the impact of head and neck cancer on multiple social aspects of the survivors’ lives. | ||
| Shannonhouse et al., 201430 US | Mixed methods To quantitatively examine the efficacy of a wellness-based psychoeducation group at increasing wellness To qualitatively explore the group experience of female breast cancer survivors | N=14; 100% women Cancer type: breast (n=13), 1 not specified Mean age: 51 years (range: 45-62 years) | Physical Informational Emotional Psychological Social Spiritual | Unknown | Other: holistic wellness program with many components, including physical activity, education, and group discussion | The Finding Your New Normal intervention, a wellness-based psychoeducation group. The group started with an overview of the wheel of wellness model and addressed topics such as medical management, sexuality, spirituality, emotional health, creativity, physical activity, and nutrition. Each session involved a form of physical activity (eg, yoga, tai chi, Pilates) followed by a brief psychoeducational presentation and group discussion. The intervention was led by a multidisciplinary team comprising a chaplain, nurse, and mental health counselor. The facilitators chose to engage members to find their own strengths and new post-cancer identity. Finding Your New Normal was an 8-week group that met weekly for 2 hours. | The Five Factor Wellness Inventory was used, which is a 73-item questionnaire. Questionnaire items are statements about wellness beliefs and behaviors; respondents replied using a 4-point Likert scale ranging from strongly disagree to strongly agree. Total Wellness increased significantly between measurements as did scores for the Essential Self and Physical Self; however, no changes were observed for the Creative Self or Social Self scores. Qualitative findings revealed that participants felt the intervention gave them hope and vision for change, and helped them find a new normal. One participant said, “…there was a strength gained from the support group that I did not have initially…. I give myself permission to have those feelings… but giving myself the space to be the new me!”(p.18) | ||
| Stuhlfauth et al., 201863 Norway | Qualitative To explore and describe how colon cancer survivors experience everyday life in general and sexuality, in particular, after treatment of Dukes C colon cancer | N=9; 56% women, 44% men Cancer type: Dukes C colon cancer Age range: 51-73 years | Physical Informational Practical | Hospital/acute care | Multicomponent education programa | Patients participated in courses on physical activity, nutrition, and life-management skills to acquire coping skills. | Participants felt the courses were rewarding; they learned various practical methods for managing their new lives. | ||
| Tagai et al., 202164 US | RCT To evaluate PROGRESS, a web-based intervention designed to improve adaptive coping among prostate cancer survivors | N=431; 100% male Cancer type: prostate Intervention group: N=217 Mean age: 63.8 years (SD: 6.7 years) Control group: N=214 Mean age: 63.3 years (SD: 7.5 years) | Physical Informational Emotional Psychological Social Practical | Online | e-health (eg, app, website); multicomponent education programa | Intervention: PROGRESS, a web-based intervention designed to improve adaptive coping among prostate cancer survivors. PROGRESS was guided by the Cognitive Social Health Information Processing model. The website addressed challenges faced by prostate cancer survivors (eg, physical function, emotional well-being, interpersonal concerns), and included written information and videos from providers and survivors, as well as tools to help participants identify values, goals, and support complementary behaviors. Each participant had a unique login ID and password, and was instructed to log into the website as needed. Logins and usage were tracked via Google Analytics. Intervention participants also received the same booklets as enhanced usual care. Control: Enhanced usual care; participants received 2 print brochures from the National Cancer Institute via mail (“Facing forward: life after cancer treatment,” and “What you need to know about prostate cancer”). | The Self-efficacy for Re-entry scale was used; a 14-item, 11-point questionnaire (0 = not at all confident, 10 = completely confident) that assessed respondents’ self-efficacy to manage their relationships, stress, medical care, and side effects in the first-year post-treatment as they resume their various roles (eg, spouse, employee, friend). The Practical Concerns scale, an adapted 12-item, 5-point questionnaire (1 = strongly disagree, 5 = strongly agree), assessed respondents’ concern about managing practical aspects of their lives, including finances, employment, and healthy lifestyle activities. Higher scores indicate greater concern. Primary analyses used an intent-to-treat approach. Researchers also conducted as-treated analyses, where the participant must have accessed PROGRESS to be considered treated. Intent-to-treat analysis: There was an increase in practical concerns for participants in both the intervention and control groups over time. Self-efficacy for Re-entry: intervention group score decreased between baseline and 6-month follow-up, as did the score of control group. As-treated analyses: PROGRESS users (ie, clicked through the home page at least once) reported a significant decrease in practical concerns compared to PROGRESS non-users. Both PROGRESS users and non-users reported an increase in practical concerns over time. Self-efficacy for re-entry: users’ group score decreased between baseline and 6-month follow-up, as did the scores of the non-user group. PROGRESS users, in the as-treated analysis, reported fewer practical concerns, suggesting the website may have helped participants cope with the tangible aspects of their survivorship (eg, financial concerns, social activities). | ||
| Thisted et al., 202065 Denmark | Qualitative To explore how participants perceived a nurse-led, person-centered intervention, Guided Self-Determination Gynecological Cancer, and how participants felt it influenced their rehabilitation after gynecological cancer surgery | N=10; 100% women Cancer type: gynecologic Age: ≥18 years | Informational Social Practical | Hospital/acute care | Clinician-led; multicomponent education programa | Guided Self-Determination Gynecological Cancer, a nurse-led, person-centered intervention, was developed and pilot tested in 2012-2015 among HCPs and women surgically treated for early stages of gynecological cancer. The intervention adapted a theory and evidence-based method in diabetes care designed to support the development of life skills. It comprised conversations between the patient and a Guided Self-Determination-trained HCP. Patients filled out reflection sheets in advance, helping them acknowledge and express their specific and individual needs, which were taken into account during the conversation. During intervention conversations, the patient and the HCP created and shared knowledge that provided a foundation for solving the issues they considered particularly important. 18 reflection sheets were spread across 4 conversations to facilitate a systematic, problem-solving process with life skills as the goal. The number of intervention conversations and use of particular sheets were adjusted depending on the individual patient’s needs. Conversations were spaced out at least 2-3 weeks apart as the patient needed time to fill out reflection sheets and try new problem-solving strategies between the conversations with the HCP. HCPs trained in Guided Self-Determination took 4 courses x 6 hours each, and courses took place over 6 months. | The intervention helped participants discover their potential to solve problems, move on, and function as well as possible after cancer. For the first time, many of the women began acknowledging and accepting their changed life conditions and discovered challenges they previously had tried to ignore. One participant said, “That was the first time I realized that I would never be quite the same as I was before… I believe that they [the Guided Self-Determination conversations] also helped me to be more honest with myself about… about how I feel when I’m struck by this I-feel-sad-when-I-think-about-never-being-myself-again thing.”(p.912) | ||
| van Egmond et al., 201666 The Netherlands | RCT To assess the effectiveness of a tailored RTW program on time until sustainable RTW for cancer survivors who had lost their job | N=130; 69% female, 31% male Cancer type: not specified Mean age: 48.4 years (SD: 8.6 years) Intervention group: N=85 Mean age: 47.9 years (SD: 8.5 years) Control group: N=86 Mean age: 48.8 years (8.7 years) | Informational Social Practical | Primary care or community and home | Other: RTW program | Intervention: The tailored RTW program consisted of an introductory interview and preparation for RTW. In the interview, potential obstacles and possibilities for RTW were identified, and a route through the intervention program was chosen. Throughout the entire program, participants were encouraged to actively participate in the development of a consensus-based RTW plan, as well as to participate in coaching sessions (with a reintegration coach) to prepare for RTW, and to explore possibilities for (therapeutic) RTW. Participants could select various routes through the different parts of the program, to match the required level of RTW support. All meetings were 1-on-1 and in-person. Intervention duration was dependent on the level of need. The maximum duration for the preparation for RTW portion was 3 months. The maximum duration for the RTW portion was 3 months. Further, a 1-month delay was allowed within the whole program to allow for unforeseen events, such as illnesses or holidays. Therefore, the maximum duration of the RTW program was 7 months. Control: Usual care from the Dutch Social Security Agency, which generally consists of a few meetings per year with an insurance physician and potentially a labor market or reintegration expert, but does not involve any reintegration supportive intervention program. | Participation in society (assessed with the Utrecht Scale for Evaluation of Revalidation and Participation). This questionnaire is about the patient’s daily life and consists of 4 parts: (1A) how much time you spend working, studying, and attending to household duties; (1B) how often you undertake certain activities; (2) whether you experience any limitations in your daily life; and (3) how satisfied you are with your daily life. There were no significant differences between groups regarding participation in society. | ||
| Wagland et al., 201567 UK | Mixed methods To explore the feasibility of delivering and measuring the impact of a life-coaching intervention designed to rebuild people’s confidence and emotional well-being and enhance quality of life by supporting individuals to select and achieve their own post-treatment goals | N=8; 87.5% female, 12.5% male Cancer type: breast (n=5), lung, head and neck, gynecologic Median age: 55 years (range: 53-68 years) | Physical Informational Psychological Social Practical | Primary care or community and telephone | Multicomponent education program; other: life-coaching goal-attainment program— participants set goals and work with life coaches to achieve them with the needed plans/resources | The life-coaching intervention was underpinned by social cognitive theory. The main purpose of life-coaching was to improve an individual’s self-efficacy, achieved through successfully pursuing self-selected goals. Participants selected 3 goals with the assistance of a life-coach following a standard practice manual. They developed a plan to reach their goals. Finally, participants implemented their plans. As participants progressed, they sometimes became aware of emerging practical and psychological challenges and alternative opportunities leading to goal refinement. The intervention was delivered free of charge by 2 professionally accredited life coaches: a general practitioner and a coach with psychoanalytical training. Both were cancer survivors. Regular debriefing discussions took place between the coaches and the project manager. The initial face-to-face session took up to 2 hours. The execution phase was implemented over 5 telephone sessions of up to 60 minutes, at approx. 2-week intervals over 12 weeks. | Some participants identified a goal of resuming normal life. Participants expressed that the intervention helped them see new possibilities, adjust to life, and move on. One participant said, “It makes you realise what else you could achieve, not just the goals you set, but all sorts of other things…. Coaching has made me realise that I don’t have to stay stuck where I am, that there are choices that I can move on [to] and cancer doesn’t stop everything in your life. I think it’s made me a bit more determined to be more authentic in my life, and to look at my values a lot more clearly and decide what’s more valuable for me.”(p.657) | ||
aAn educational intervention encompassing more than an educational handout/pamphlet to read was considered a multicomponent education program. This mode of delivery was later included under the follow-up education and support intervention type.
HCP, health care professional; RCT, randomized controlled trial; RTW, return-to-work; SCP, survivorship care plan.
Footnotes
The authors declare no conflicts of interest.
Supplemental digital content is available for this article: http://links.lww.com/SRX/A36.
Contributor Information
Sarah Murnaghan, Email: sr438725@dal.ca.
Sarah Scruton, Email: sarah.scruton@nshealth.ca.
Robin Urquhart, Email: robin.urquhart@nshealth.ca.
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