Adaptation and resilience in families of cancer survivors: a scoping review protocol on their dual impact on caregiver burden and post-traumatic growth

Abstract

Introduction

Cancer survivorship places substantial and enduring demands not only on survivors themselves but also on their families and informal caregivers. Family adaptation and family resilience are increasingly recognised as key family-level processes that may alleviate caregiver burden and foster post-traumatic growth (PTG). However, the existing evidence remains fragmented because of inconsistencies in conceptual definitions, theoretical frameworks, study designs and outcome measures.

Objectives

This scoping review aims to systematically map the existing literature on family adaptation and family resilience among families of cancer survivors, with particular attention to their associations with caregiver burden and post-traumatic growth. The review will clarify key concepts, describe the characteristics and extent of the available evidence and identify knowledge gaps to inform future research and family-centred psychosocial care.

Methods and analysis

This protocol is guided by the Arksey and O’Malley framework, with subsequent methodological refinements for scoping reviews. A comprehensive search will be conducted in PubMed, Embase, CINAHL, Web of Science, the Cochrane Library, Scopus, China National Knowledge Infrastructure, Wanfang Data, VIP Database and the Chinese Biomedical Literature Database from database inception to 7 January 2026. Grey literature sources, as well as the reference lists of included studies and relevant reviews, will also be searched. Eligibility will be determined using the Population–Concept–Context framework: the population will include family members, family caregivers and informal caregivers of cancer survivors; the concepts will include family adaptation, family resilience, caregiver burden and post-traumatic growth; and the context will encompass cancer survivorship and related care settings. Studies published in English and Chinese will be included with no geographical restrictions. Two reviewers will independently screen studies and extract data using a standardised form, and disagreements will be resolved by a third reviewer. Extracted data will be synthesised descriptively and presented in tables, charts and a narrative summary. The completed scoping review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews.

Ethics and dissemination

Ethics approval is not required because this study will synthesise evidence from published and publicly available sources. The findings will be disseminated through peer-reviewed publication, conference presentations and professional networks.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• This protocol is guided by an established methodological framework for scoping reviews and plans transparent reporting in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).

• A comprehensive search strategy will be implemented across multiple international and Chinese databases, supplemented by grey literature searching and reference list screening to improve the breadth of evidence capture.

• Study selection and data extraction will be conducted independently by two reviewers, with disagreements resolved by a third reviewer, thereby enhancing methodological rigour and consistency.

• As this scoping review is intended to map the breadth and characteristics of the available evidence rather than to evaluate intervention effects, formal critical appraisal of included studies is not planned.

• Restriction to studies published in English and Chinese may introduce language bias and lead to the omission of potentially relevant evidence published in other languages.

Background

Cancer remains a major global public health challenge.¹ According to global cancer statistics for 2022, there were an estimated 20 million new cancer cases and 9.7 million cancer-related deaths worldwide.² Advances in diagnostic and therapeutic technologies have substantially improved survival,³ resulting in a growing population of cancer survivors, defined as individuals living from the time of diagnosis through the remainder of life.⁴

However, improved survival has not necessarily translated into proportional gains in quality of life. Cancer survivors commonly experience multiple co-occurring symptoms related to both the disease and its treatment, including physical dysfunction, pain, fatigue and psychological distress, which together contribute to a persistent symptom burden.⁵ These complex and long-term care needs often exceed survivors’ self-management capacity, thereby increasing reliance on family systems and informal caregiving.⁶ As a result, cancer increasingly becomes not only an individual health condition but also a shared family challenge, placing substantial demands on family caregivers.⁷ Family caregivers of cancer survivors frequently experience caregiver burden, a multidimensional construct encompassing the physical, emotional, social, economic and time-related strains associated with caregiving responsibilities.⁸ Such burden can adversely affect caregivers’ psychological and physical health, as well as their overall quality of life. The psychological impact is particularly pronounced, with reported prevalence rates of depressive and anxiety symptoms reaching 46.3% and 53.0%, respectively. Approximately 30.7% of caregivers report severe burden, and burden severity appears to increase with caregiving duration.^{9 10} Long-term caregiving is also associated with fatigue, sleep disturbance, poorer self-rated health and reduced social engagement. Daily routines are frequently disrupted, and family relationships may become strained.^{11 12} Financial hardship is also substantial, as many caregivers reduce working hours or leave employment entirely, a burden further compounded by poor patient functional status and prolonged care duration.^{6 9 13} In addition, female and younger caregivers, as well as those with limited social support, tend to report greater burden, highlighting persistent disparities across psychological, physical and socioeconomic domains.^{8 10}

Despite these chronic and multifaceted demands, psychosocial responses among caregivers vary considerably. While many caregivers experience exhaustion, anxiety, depression and diminished quality of life,¹⁴,¹⁶ others report positive psychological change in the form of post-traumatic growth (PTG).¹⁷,²⁰ In this context, PTG refers to the positive psychological change that may arise through the struggle with cancer-related caregiving challenges and may be reflected in self-reconstruction, strengthened spiritual beliefs, a renewed appreciation of life and transformed relationships with others.²¹ Adverse psychological outcomes have been linked to insufficient social support and maladaptive coping strategies.²²,²⁴ These findings suggest that objective caregiving demands alone do not fully explain caregiver outcomes; rather, such outcomes are likely influenced by broader psychosocial and family-level processes. This variability raises an important question: what accounts for these divergent adaptation pathways? Clarifying the factors that shape these pathways is essential for informing targeted, family-centred support strategies.

From a family systems perspective, the family may represent a key explanatory context for understanding differential responses to cancer-related stress. Family systems theory emphasises the interconnectedness of family members and the ways in which family interactions shape individual behaviours and well-being.²⁵ Grounded in family systems theory and Walsh’s family resilience framework,²⁶ family adaptation and family resilience are particularly relevant constructs for understanding how families respond to illness-related adversity. Family adaptation refers to the dynamic reorganisation of family roles, routines and communication in response to changing demands,²⁷ whereas family resilience describes the collective capacity of the family to mobilise resources, maintain stability and sustain positive functioning in the face of adversity.²⁶ From this perspective, caregiver outcomes are shaped not only by individual coping capacities but also by the ways in which families reorganise roles, maintain communication and construct shared meaning under conditions of chronic stress. Highly adaptable families may be better able to minimise conflict and strengthen mutual support, whereas resilient families may buffer stress through shared problem-solving, emotional support and meaning-making processes that may also facilitate PTG.^{28 29} Empirical evidence further suggests that family resilience may reduce caregiver burden indirectly by strengthening individual resilience and perceived social support,^{30 31} whereas successful family adaptation may help create an emotionally secure environment that supports psychological growth.³² Collectively, these perspectives highlight the importance of examining caregiver outcomes not only at the individual level but also within the broader family context.

Nevertheless, the current literature remains heterogeneous with respect to conceptual definitions, theoretical frameworks, study designs and measurement approaches, limiting comparability across studies and hindering evidence synthesis.³³,³⁵ A scoping review is therefore warranted to systematically map the available evidence, clarify the conceptual and theoretical relationships among family adaptation, family resilience and caregiver outcomes, and identify gaps in this emerging field. Such synthesis is needed to inform the future development of family-centred psychosocial interventions. Accordingly, this review aims to provide a coherent conceptual foundation to support the design of interventions that promote psychological well-being and adaptive growth among caregivers of cancer survivors.

Objectives

Building on the conceptual framework outlined above, this scoping review aims to systematically map and synthesise the current evidence on family adaptation and family resilience within the context of caring for cancer survivors. Specifically, the review will:

1. Clarify the conceptual and theoretical foundations of family adaptation and family resilience as applied in research involving families of cancer survivors.

2. Identify key factors and contextual influences that shape family adaptation and resilience processes in this population.

3. Examine the dual impact of family adaptation and family resilience on caregiver outcomes, particularly caregiver burden and post-traumatic growth (PTG).

4. Highlight knowledge gaps and methodological limitations in the existing literature to guide future research and inform the development of family-centred psychosocial interventions for this population.

By systematically mapping the scope and characteristics of existing studies, this review seeks to provide an integrative understanding of how family-level processes influence caregivers’ psychosocial adaptation, thereby informing strategies to strengthen family resilience and support positive psychological adjustment among caregivers of cancer survivors.

Methods

Protocol design

This scoping review protocol is guided by the methodological framework proposed by Arksey and O’Malley and will follow six stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarising and reporting the results; and (6) consultation.³⁶ Where appropriate, subsequent methodological refinements for scoping reviews will also be considered to enhance the clarity and rigour of the review process. The completed scoping review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).³⁷ This protocol has been registered in the Open Science Framework (Registration DOI: 10.17605/OSF.IO/4BS29).

Stage 1: identifying the research question

Guided by the conceptual framework and the knowledge gaps identified in the Background, this scoping review will systematically examine how family adaptation and family resilience operate within the context of caring for cancer survivors. The review seeks to clarify how these family-level processes are defined, applied, and examined in relation to key psychosocial outcomes—particularly caregiver burden and post-traumatic growth (PTG)—across diverse study designs. Accordingly, the following research questions will guide the review:

1. Conceptualisation and theoretical framing: How are family adaptation and family resilience conceptualised, theoretically grounded and operationalised in empirical studies focusing on families of cancer survivors?

2. Determinants and influencing factors: What multilevel determinants—spanning individual characteristics, family dynamics and healthcare system factors—facilitate or impede the development of family adaptation and resilience in this context?

3. Empirical relationships and proposed mechanisms: What patterns of empirical evidence have been reported regarding the associations between family adaptation and resilience processes and caregiver outcomes (caregiver burden and PTG) among families of cancer survivors, and what mediating or moderating mechanisms have been proposed to explain these associations?

Stage 2: identifying relevant studies

A comprehensive search strategy will be undertaken to identify studies relevant to family adaptation and family resilience in the context of cancer survivorship. Eligibility will be guided by the Population–Concept–Context (PCC) framework. The population will include family members, family caregivers and informal caregivers of cancer survivors. The concepts of interest will include family adaptation, family resilience, caregiver burden and post-traumatic growth. The context will encompass cancer survivorship and related care settings across the cancer trajectory.

The electronic search will cover major international databases, including PubMed, Embase, CINAHL, Web of Science, the Cochrane Library and Scopus, as well as major Chinese databases, including the China National Knowledge Infrastructure, Wanfang Data, VIP Database and the Chinese Biomedical Literature Database. The search strategy will combine controlled vocabulary terms with free-text keywords using Boolean operators. Search terms will be developed around the core domains of cancer survivorship, family adaptation, family resilience, caregiver burden and post-traumatic growth, together with relevant synonyms and related expressions, including terms such as family caregiver and informal caregiver where appropriate.

The search strategy was developed by members of the review team with experience in evidence synthesis and oncology-related research and was iteratively refined through preliminary searching in PubMed and China National Knowledge Infrastructure to improve its sensitivity and specificity before translation across databases. The full PubMed search strategy is provided in online supplemental appendix 2 and will be adapted for use in the other databases according to their indexing systems and search interfaces.

To improve the comprehensiveness of the review, grey literature sources will also be searched, including dissertations and theses, conference materials and relevant organisational or professional websites where appropriate. In addition, the reference lists of all included studies and relevant reviews will be hand-searched to identify further eligible records. The search will include studies published from database inception to 7 January 2026, with no geographical restrictions. Studies published in English and Chinese will be considered for inclusion. This language restriction is based on the language proficiency of the review team and the feasibility of conducting accurate screening, data extraction and interpretation within the available resources.

Stage 3: study selection

All retrieved records will be imported into Zotero reference management software for systematic organisation, and duplicate entries will be removed using a combination of automated and manual procedures. Study selection will be conducted in two sequential phases: an initial screening of titles and abstracts against the predefined eligibility criteria, followed by a full-text assessment of potentially relevant studies. Two reviewers (PP and AL) will independently assess each record at both stages using a piloted, standardised screening form based on the inclusion and exclusion criteria outlined in table 1. Any discrepancies in screening decisions will be resolved through discussion and consensus between the two reviewers, and any remaining disagreements will be adjudicated by a third reviewer (YYF). Reasons for exclusion at the full-text screening stage will be recorded. The study selection process will be presented using a PRISMA 2020 flow diagram, with the template provided in online supplemental appendix 1, to ensure transparent and reproducible reporting of the identification, screening, eligibility and inclusion of studies.³⁸

Table 1. Review eligibility criteria based on study population, concept, context and types of evidence.

Category	Inclusion criteria	Exclusion criteria
Population	Adult family caregivers (≥18 years) of cancer survivors who were diagnosed in adulthood (≥18 years).	Caregivers of paediatric cancer survivors; professional or paid caregivers; studies in which caregiver outcomes cannot be clearly distinguished.
Concept	Studies examining family adaptation and/or family resilience and their associations with caregiver burden and/or post-traumatic growth.	Studies not focusing on family adaptation or family resilience, or studies that measure caregiver burden or growth in isolation without linkage to these concepts.
Context	Any setting across the cancer survivorship care continuum; no geographical restrictions.	Not applicable.
Types of evidence	Original primary research (quantitative, qualitative, or mixed-methods); full-text articles published in English or Chinese.	Reviews, editorials, commentaries, conference abstracts, study protocols, articles without full text, or articles published in languages other than English or Chinese.

Stage 4: charting the data

Two reviewers (PP and AL) will independently extract data from all included studies using a standardised data extraction form developed through team consensus. The form will be created and managed in Microsoft Excel to facilitate the systematic organisation and management of extracted information. Extracted data will include publication details (eg, title, authors and year), methodological characteristics (eg, study design and country or region), sample attributes (eg, participant profile and sample size), the conceptualisation and measurement of family adaptation and/or family resilience, measurement instruments used to assess caregiver outcomes, particularly caregiver burden and post-traumatic growth, and any reported associations, pathways or mechanisms linking family-level processes to caregiver outcomes. Where applicable, details of family-level or family-centred interventions related to adaptation or resilience processes will also be extracted. Prior to full implementation, the data extraction form will be piloted on a subset of eligible studies and refined iteratively to ensure clarity, consistency and comprehensiveness. Any discrepancies between the two reviewers will be resolved through discussion and consensus, with arbitration by a third reviewer (YYF) when necessary. Where essential data are missing or unclear, the corresponding authors of the included studies will be contacted to obtain supplementary information. The draft data extraction form is provided in online supplemental appendix 3.

Stage 5: collating, summarising and reporting the results

The extracted data will be synthesised to produce a comprehensive narrative summary that directly addresses the review’s research questions. The synthesis will systematically describe how family adaptation and family resilience have been conceptualised and theoretically applied in the literature, identify key factors reported to influence these processes and summarise how they have been associated with caregiver outcomes in the context of cancer survivorship, particularly caregiver burden and post-traumatic growth (PTG). Findings will be organised thematically and presented in tables and conceptual figures to illustrate study characteristics, including geographical locations, study designs, participant features, measurement instruments and key reported findings. Where appropriate, conceptual frameworks will be mapped to depict reported linkages between family-level processes and caregiver outcomes. As the purpose of this scoping review is to map the breadth and characteristics of the available evidence rather than to evaluate intervention effects or generate pooled estimates, no formal critical appraisal of study quality or quantitative synthesis of effect estimates is planned. To ensure methodological rigour and transparency, the synthesis and reporting of results will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).³⁷

Stage 6: consultation

To enhance the interpretive validity of the review findings and inform future research directions, this scoping review will include a structured consultation exercise consistent with established scoping review methodology. An advisory panel comprising multidisciplinary experts, including oncology clinicians, nursing scholars and researchers in psychosocial oncology and family systems, as well as representatives of cancer survivors and family caregivers, will be convened. Preliminary findings from the review will be shared with the advisory panel to obtain feedback on the interpretation, relevance and potential implications of the results. Consultation will be conducted in an advisory capacity, focusing on reflective discussion rather than the generation of primary research data. Feedback will be documented in summary form and used to refine the interpretation of findings, identify contextual considerations relevant to clinical and community care settings and highlight priorities for future research and the development of family-centred psychosocial interventions in cancer survivorship care.

Discussion

This scoping review will address an important gap in the cancer survivorship literature by mapping how family adaptation and family resilience have been conceptualised, measured and studied in relation to caregiver burden and post-traumatic growth (PTG). Within the family systems literature, family adaptation and family resilience have been widely conceptualised as core protective processes that may help alleviate caregiver burden while fostering psychosocial conditions that support positive psychological adjustment and growth.^{7 32} Existing empirical studies also suggest that adaptive family processes, such as role flexibility, effective communication and collaborative problem-solving, are associated with lower levels of intra-familial conflict and stronger collective coping capacities.^{29 39 40} A scoping review is therefore appropriate to clarify the breadth and characteristics of the available evidence, identify commonly used conceptual and measurement approaches and highlight areas requiring further conceptual and methodological development.⁴¹

The findings of this review are expected to inform future research and family-centred psychosocial care by identifying how family adaptation and family resilience have been examined across different cancer survivorship contexts. Current evidence appears to focus more heavily on adverse caregiver outcomes, such as burden and psychological distress, whereas positive adaptive outcomes, including post-traumatic growth and improved family functioning, have received comparatively less attention.^{9 21 42} In addition, the predominance of cross-sectional designs and the limited number of longitudinal and intervention studies constrain understanding of the temporal dynamics and longer-term effects of family adaptation and resilience across the survivorship continuum.²⁹⁴³,⁴⁵ Potential limitations of the review include restriction to studies published in English and Chinese and the absence of formal critical appraisal, which may limit interpretation of the methodological robustness of the included evidence.

Ethics and dissemination

This study is based on previously published research and does not require ethical approval. Findings will be disseminated through professional networks, conference presentations and publication in a scientific journal.

Data availability statement

Data sharing not applicable as no datasets were generated or analysed in this study.