Parents living with and beyond cancer: A scoping review of unmet supportive care needs and impact on daily life

Abstract

Introduction:

Parenting is a valued and complex role that is shaped by culture and context, which can be significantly impacted by a cancer diagnosis. This scoping review explored the unmet supportive care needs and impact on daily life for parents living with and beyond cancer.

Methods:

We used the PRISMA extension for scoping reviews (PRISMA-ScR) reporting guidelines to conduct a scoping review of the literature. Peer-reviewed literature published between January 2006 and December 2021 was searched using five databases: CINAHL, PsycINFO, PubMed, EMBASE, and Web of Science.

Results:

A total of 47 articles were included in the review representing 14 countries. Unmet supportive care needs persist across physical, spiritual, psychological, social, informational, practical, emotional domains, regardless of cancer diagnosis, stage of cancer or phase of the cancer care continuum. These unmet needs significantly impacted the daily lives of mothers and fathers living with and beyond cancer throughout studies.

Conclusion:

The results from this review highlight the range of reported supportive care needs of parents and its impact potentially contributing to occupational disruption. This provides a unique opportunity for occupational therapy practitioners to contribute to the occupational needs of parents living with and beyond cancer as an integral member of the interprofessional cancer care team.

Keywords

Scoping review parenting cancer supportive care impact

Introduction

Parenting is a valued and complex role that is shaped by culture and context, which can be significantly impacted by a cancer diagnosis. The role of parent can be defined by the specific activities and occupations in which parents engage to meet a range of child needs (Lim et al., 2022). A cancer diagnosis can disrupt this role as there is an inherent conflict between caring for oneself and caring for others, leading to unmet supportive care needs. Studies suggest that parents with cancer often have difficulty maintaining normalcy and often have to alter their “normal” parental responsibilities and routines (Caparso et al., 2021; Matuszczak-Świgoń and Bakiera, 2021; Moore et al., 2015; Park et al., 2017; Schiena et al., 2019). Daily responsibilities such as caring for children, maintaining a home, and engaging in social and educational activities for dependent school-aged children and youth must be balanced with the challenges associated with cancer (Fernandes et al., 2012). These changes to routines may arise from the side effects of cancer and cancer treatments, risk of infection due to cancer treatments, frequent medical appointments, as well as anxiety about the future (Arida et al., 2019; Caparso et al., 2021; Park et al., 2017; Rashi et al., 2015; Schiena et al., 2019; Torp et al., 2013).

There is a need for a more holistic understanding of parenting in occupational therapy across a broad range of disabilities and health conditions, including cancer (Lim et al., 2022). In a population-based study, it was found that 14–24.7% of parents with cancer have minor children (Inhestern et al., 2021), making parenting an important survivorship issue. Traditionally, the focus of parenting is meeting the physiological and developmental needs of the child (Lim et al., 2022; American Occupational Therapy Association, 2020); however, Hackett & Cook (2016) suggest re-focusing on parental needs and well-being. This re-focusing may allow occupational therapy practitioners the opportunity to explicitly address the occupational needs of parents (Lim et al., 2022).

In 1994, the Supportive Care Framework was created as a tool to help cancer care professionals determine the needs of cancer patients (Fitch, 2008). The Supportive Care Framework outlines seven needs that may be experienced by parents living with cancer, and it notes that these needs may vary across individuals, time, disease course, and treatment (Fitch, 2008). Fitch (2008) defines these needs as physical, informational, emotional, psychological, social, spiritual, and practical. These supportive care areas help to capture the complex and unique needs of parents living with a cancer diagnosis. To date, the parenting and cancer literature has largely focused on the psychological, social, emotional, and informational needs of parents primarily living with breast cancer across the cancer care continuum (Caparso et al., 2021; Johannsen et al., 2022; Kuswanto et al., 2018; Matuszczak-Świgoń & Bakiera, 2021; Tavares et al., 2018). Furthermore, when the parent is at end of life, the focus of the literature on supportive care shifts to concerns around communicating with children about impending death (Caparso et al., 2021).

This scoping review was undertaken to fill a gap in the literature and map existing descriptive research examining the supportive care needs of parents living with cancer across the cancer care continuum (as reported by parents). This review uses the definition of supportive care proposed by Fitch (2008) as an organizing structure to examine the needs and daily life challenges of parents living with or beyond a cancer diagnosis who have dependent children. Supportive care is defined as “the provision of the necessary services for those living with or affected by cancer to meet their physical, emotional, social, psychological, informational, spiritual and practical needs during the diagnostic, treatment, and follow-up phases, encompassing issues of survivorship, palliative care and bereavement” (Fitch, 2008: 11).

The review sought to answer the following questions:

What is the range of supportive care needs of parents with minor children living with and beyond a cancer diagnosis?

What is the impact of unmet supportive care needs on the daily life of parents living with and beyond a cancer diagnosis?

Whose perspectives have been represented in the literature (mothers, fathers, guardians)?

Methods

A scoping review was selected as the most relevant methodology for identifying and mapping the available evidence on a given topic (Arksey and O’Malley, 2005). We followed the methods outlined by Arksey and O’Malley (2005) and further refined by Levac et al. (2010). We used the PRISMA extension for scoping reviews (PRISMA-ScR) reporting guidelines to conduct a scoping review of the literature (Tricco et al., 2018).

Identification of relevant studies

We developed our search strategy in collaboration with a library and information sciences professional with expertise in health sciences. Peer-reviewed literature published between January 2006 and December 2021 was searched using five databases: CINAHL, PsycINFO, PubMed, EMBASE, and Web of Science. The review authors also examined reference lists for potential inclusion to ensure all appropriate studies were included. The search strategy included the following keywords selected in consultation with the university health sciences librarian: Parenting OR parent* OR child care OR child rearing OR care taking; neoplasm* OR cancer OR cancer diagnosis OR cancer patient; occupation* OR work* OR activities of daily living or daily life OR quality of life; NOT pediatric* OR childhood cancer.

Articles met the inclusion criteria if they (1) described perspectives of parents living with or beyond cancer with dependent children, including at end of life; (2) focused on the impact on occupations, daily routine, psychological function, functional performance, and participation on daily life; (3) were peer-reviewed articles published between 2006 and 2021; (4) were written in English; and (5) used a qualitative research design (descriptive, mixed methods, cross-sectional, longitudinal, etc.).

Articles were excluded for the following reasons: (1) focus on the perspective of the child only; (2) focus on intervention; (3) full text was not available in English; (4) focus on perspectives of healthcare providers or other providers; (5) systematic reviews; (6) non-scientific articles, study protocols, conference abstracts, dissertation/theses, editorials, posters, commentaries; and (7) text published in non-academic journal.

Study selection

Articles from the literature searches were downloaded from the five databases and uploaded into Covidence for deduplication, title-abstract screening, and full-text screening. Hand-searched articles were also imported into Covidence. Inclusion and exclusion criteria predetermined by the research team were utilized to determine eligibility of articles. Abstracts and titles were screened “yes,” “no,” or “maybe” by at least two researchers independently, and any conflicts were resolved by a third reviewer. If there was continued disagreement between the raters, the article was kept for full-text review. Abstracts that clearly did not meet the inclusion criteria were excluded from the study. Full-text articles were evaluated to determine whether the article met all of the selection criteria. Articles were then reviewed in full text by the two raters who reviewed abstracts and titles, and conflicts were again resolved by a third rater. After articles were reviewed through the search process, hand searching of reference lists was conducted to identify other references not captured by the original database search. References were screened by reviewers following the same approach as above. We continued to examine reference lists from newly selected articles until no new references were found. The search and selection results were summarized using a PRISMA flow diagram (See Figure 1).

Figure 1.

PRISMA diagram.

Quality appraisal

We utilized the Mixed Methods Appraisal Tool (Hong et al., 2018), which included five criteria to assess the quality of qualitative articles and five criteria to assess the quality of mixed methods articles. Two researchers reviewed each article independently, evaluated for quality, and then discussed and resolved discrepancies until consensus was reached. The quality of articles varied (see Table 1 for criteria and quality of selected articles). No articles were excluded based on their quality assessment to ensure the representation of a wide range of parental perspectives was included in the analytic process.

Table 1.

Quality appraisal of studies.

Author, date, country	Qualitative					Mixed methods
Author, date, country	Q1.1	Q1.2	Q1.3	Q1.4	Q1.5	Q5.1	Q5.2	Q5.3	Q5.4	Q5.5
Arida, 2019, USA	*	*	*	*	*
Asbury, 2014, UK	*	*	*	*	*
Bekteshi, 2013, USA	*	*	*	*	*
Buchbinder, 2009, USA	*	*	*	*	*
Check, 2017, USA	*	*	*	*	*
Chin, 2021, Taiwan	*	*	*	*	*
Collaco, 2019, UK	*	*	*	*	*
Corney, 2016, UK	*	?	*	*	*
Davey, 2012, USA	*	*	*	*	*
de Castro, 2018, Brazil	*	?	*	*	*
Dencker, 2019 Denmark	*	*	*	*	*
Elmberger, 2008, Sweden	*	?	?	?	?
Garrard, 2017, Australia	*	*	*	*	*
Fisher, 2012, Australia	*	*	*	*	*
Hailey, 2018, USA						*	*	*	*	*
Inhestern, 2018, Germany	*	*	*	*	*
Inhestern, 2021, Germany						*	*	*	*	*
Kenne Dornel, 2018, Brazil	*	?	?	?	?
Kim, 2012, South Korea	*	?	*	*	*
Kissil, 2014, USA	*	*	*	*	*
Lalayiannis, 2018, UK	*	*	*	*	*
Loggers, 2019, USA	*	*	*	*	*
Lundquist, 2020, USA	*	?	*	*	*
Lundquist, 2017, USA	*	?	?	?	?
Mackenzie, 2014, Australia	*	?	*	*	*
Nelson, 2020, USA	*	—	—	—	—
Öhlén, 2006, Sweden	*	?	?	?	?
O’Neill, 2018, Ireland	*	*	*	*	*
Park, 2017, USA	*	*	*	*	*
Park, 2019, USA						*	*	*	*	*
Park, 2021, USA						*	*	*	*	*
Rashi, 2015 Canada	*	?	*	*	*
Schiena, 2019, Australia	*	?	*	*	*
Semple, 2010, UK	*	?	*	*	*
Shands, 2021, USA	*	*	*	*	*
Sheehan, 2011, USA	*	*	*	*	*
Shiino, 2020, Japan	*	?	*	*	*
Sinclair, 2019, Australia	*	*	*	*	*
Steiner, 2020, Australia	*	?	*	*	*
Stiffler, 2008, USA	*	?	*	*	*
Stinesen Kollberg, 2014, Sweden						*	*	*	*	*
Strickland, 2015, Canada	?	?	?	?	?
Tamura, 2021, Japan	*	*	*	*	*
Torp, 2013, Norway						*	*	*	*	*
Wang, 2020, China	*	*	*	*	*
Huang, 2017, China	*	*	*	*	*
Xu, 2021, China	*	*	*	*	*

Universal questions S1 and S2 were “yes” for all studies.

S1. Are there clear research questions?

S2. Do the collected data allow to address the research questions?

Qualitative

1.1. Is the qualitative approach appropriate to answer the research question?

1.2. Are the qualitative data collection methods adequate to address the research question?

1.3. Are the findings adequately derived from the data?

1.4. Is the interpretation of results sufficiently substantiated by data?

1.5. Is there coherence between qualitative data sources, collection, analysis, and interpretation?

Mixed methods

5.1. Is there an adequate rationale for using a mixed methods design to address the research question?

5.2. Are the different components of the study effectively integrated to answer the research question?

5.3. Are the outputs of the integration of qualitative and quantitative components adequately interpreted?

5.4. Are divergences and inconsistencies between quantitative and qualitative results adequately addressed?

5.5. Do the different components of the study adhere to the quality criteria of each tradition of the methods involved?

yes; ?can’t tell- no.

Data extraction and reporting

A customized template was developed in Covidence and used to extract data from the selected descriptive articles. Data extracted for each article included the following: (1) author and year of publication; (2) country where the study was conducted; (3) aim of study; (4) study design; (5) participant characteristics, including age, gender, education, diagnosis(es), treatment stage and phase of cancer continuum; (6) age of children; and (7) perspectives captured (mothers vs fathers). We also extracted data for each supportive care domain that was discussed in the selected articles as defined by Fitch (2008) as well as reported impact on daily life. Data were analyzed by parental role (e.g., mother, father); diagnosis, stage of cancer, age of child, phase of cancer continuum (e.g., survivorship, active treatment, advance disease/end of life).

Results

After searching 2745 citations and 131 full-text papers, 47 articles were included. The 47 articles were disseminated between 2006 and 2021, with 61% published within the last 5 years (2016–2021). Features of included studies are included in Table 2, including country of origin, primary perspective (mother/father), and stage of cancer age of children in sample, demographics, and supportive care needs reported/impact. Results represent perspectives from 14 countries including the United States of America (n = 17), Australia (n = 5), Germany (n = 2), United Kingdom (n = 5), Canada (n = 3), Sweden (n = 3), China (n = 3), Brazil (n = 2), Japan (n = 2), Taiwan (n = 1), Denmark (n = 1), South Korea (n = 1), Ireland (n = 1), and Norway (n = 1). Twenty-seven of the studies focused on the perspective of mothers, where only 4/47 studies focused on perspectives of fathers. The remainder of studies either did not report or included a mixed sample of mothers and fathers. The majority of studies included parents with school-aged children, ages 6–18. Parents with younger children were less represented among the studies.

Table 2.

Evidence table.

Author, date, country	Aim of study	Study design	Demographics	Age of children in sample	Supportive care needs reported/impact
Arida, 2019, USA	To describe the experience of mothers with ovarian cancer and the interaction between their roles as mothers and patients with cancer	Qualitative	Population: MomsDiagnosis: Ovarian cancerStage of cancer: Advanced/end of lifeCollege education: 75%	Not reported	Physical, emotional, psychological, social, practicalImpact: Role/role loss; routines
Asbury, 2014, UK	To investigate the experiences of mothers in telling their children of their diagnosis	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: SurvivorshipCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Informational, emotional, socialImpact: None reported
Bekteshi, 2013, USA	To examine mothers’ perceptions of their cancer experience on their relationships with daughters	Qualitative	Population: MomsDiagnosis: Mixed (47% breast cancer)Stage of cancer: ActiveCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	Physical, emotional, psychological, socialImpact: Shared routines; psychological function
Buchbinder, 2009, USA	To examine the reorganization of family life after a parent’s cancer diagnosis, including how their families developed and experienced new routines and rituals	Qualitative	Population: MixedDiagnosis: Mixed (50% breast cancer)Stage of cancer: ActiveCollege education: Not reported	0–5: Yes6–11: Yes12–18: No	N/AImpact: Routines and rituals
Check, 2017, USA	To explore how parental values and concerns motivate patients’ preferences about aggressiveness of advanced cancer treatment as well as preferences for palliative care and hospice services	Qualitative	Population: MixedDiagnosis: Mixed (24% breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 75%	0–5: No6–11: Yes12–18: Yes	Physical, informational, emotional, psychological, social, practicalImpact: Role/role loss; routines
Chin, 2021, Taiwan	To examine Taiwanese mothers’ experiences of and cultural practices embedded in parenting young children while in treatment for breast cancer	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18: No	Informational, psychological, social, spiritualImpact: Role/role loss; routines
Collaco, 2019, UK	To explore the challenges faced by younger couples affected by prostate cancer with dependent children (under 18 years) or young adults (18–29 years) in their families	Qualitative	Population: DadsDiagnosis: Prostate cancerStage of cancer: SurvivorshipCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, informational, emotional, psychological, socialImpact: Role loss
Corney, 2016, UK	To examine the facilitators and barriers to couple relationships in families with dependent children after a diagnosis of maternal breast cancer in the United Kingdom	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: SurvivorshipCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, emotional, psychological, socialImpact: Role/role loss
Davey, 2012, USA	To better understand African American parents’ experiences parenting their school-age children while navigating breast cancer to develop culturally sensitive family intervention programs	Qualitative	Population: MixedDiagnosis: Breast cancerStage of cancer: MixedCollege education: Not reported	0–5: No6–11: Yes12–18+: Yes*	Physical, emotionalImpact: Shared routines, psychological function
de Castro, 2018, Brazil	To investigate the experience of motherhood of women with cancer with at least one child less than 10 years	Qualitative	Population: MomsDiagnosis: Mixed (60% Breast cancer)Stage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, emotional, psychological, social, practicalImpact: Role/role loss; routines; rituals
Dencker, 2019 Denmark	To explore how patients balance the demands of parenthood with those of being a seriously ill patient, and how this balancing act influences the patients’ communication preferences with healthcare professionals	Qualitative	Population: MixedDiagnosis: Hematological and gynecological cancerStage of cancer: MixedCollege education: not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, informational, emotional, psychological, social, spiritualImpact: Role/role loss; routines
Elmberger, 2008, Sweden	To describe how mothers with cancer perceived their relationship with their children and values connected with “good mothering” in order to suggest nursing activities to promote a healthy transition process	Qualitative	Population: MomsDiagnosis: Mixed (37.5% breast cancer)Stage of cancer: SurvivorshipCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, informational, emotional, psychological, social, practicalImpact: Role/role loss; routines
Garrard, 2017, Australia	To explore rural families’ functioning following a parental cancer diagnosis	Qualitative	Population: MixedDiagnosis: Not reportedStage of cancer: Not reportedCollege education: Not reported	0–5: No6–11: Yes12–18: Yes	Informational, emotional, social, practicalImpact: Role/role loss; routines
Fisher, 2012, Australia	To explore the impact of breast cancer on the identities of young women as mothers	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18: No	Physical, informational, emotional, psychological, social, spiritualImpact: Role/role loss
Hailey, 2018, USA	To describe how parents communicated with their children about advanced cancer and to explore associations between communication and parental depression and anxiety	Mixed methods	Population: MixedDiagnosis: Mixed (26.2% breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 25%	0–5: No6–11: Yes12–18: Yes	Informational, emotionalImpact: None reported
Inhestern, 2018, Germany	To explore the strains and resources of families of mothers with cancer from the mother’s and father’s perspective	Qualitative	Population: MomsDiagnosis: Mixed (69% breast cancer)Stage of cancer: ActiveCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	Physical, informational, emotional, psychologicalImpact: Role/role loss; routines
Inhestern, 2021, Germany	To investigate the impact of parental cancer on the minor children, family-specific psychosocial needs and quality of life levels of parents and children	Mixed methods	Population: MixedDiagnosis: Mixed (62.8% breast cancer)Stage of cancer: ActiveCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	Informational, emotional, social, practicalImpact: None reported
Kenne Dornel, 2018, Brazil	To understand how mothers with cancer communicate about cancer with their children	Qualitative	Population: MomsDiagnosis: Mixed (50% Breast cancer)Stage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Informational, socialImpact: Role/role loss
Kim, 2012, South Korea	To explore the impact of breast cancer on Korean mothers and their children following diagnosis	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: SurvivorshipCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Physical, emotional, social, practicalImpact: Psychological function
Kissil, 2014, USA	To examine how African American parents cope with the diagnosis and treatment of breast cancer	Qualitative	Population: MixedDiagnosis: Breast cancerStage of cancer: MixedCollege education: Not reported	Not reported	N/AImpact: Role/role loss; routines
Lalayiannis, 2018, UK	To explore how women experience telling their adolescent children of their secondary breast cancer diagnosis	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: Not reportedCollege education: Not reported	0–5: No6–11: No12–18+: Yes*	EmotionalImpact: Shared routines, psychological function
Loggers, 2019, USA	To investigate Hispanic mothers’ willingness to communicate with dependent children about her actual or hypothetical advanced cancer diagnosis	Qualitative	Population: MomsDiagnosis: Mixed (55.6% breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 75%	0–5: Yes6–11: Yes12–18: Yes	Physical, informational, emotional, psychological, social, practicalImpact: Shared routines, psychological function
Lundquist, 2020, USA	To conduct a detailed content analysis of the theme “I’m still Mom” as described by young women living with advanced breast cancer	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: Advanced/end of lifeCollege education: 75%	0–5: Yes6–11: Yes12–18: Yes	Physical, emotional, socialImpact: Role/role loss; routines
Lundquist, 2017, USA	To examine the experience of fathers navigating the challenges of living with advanced cancer while parenting minor children	Qualitative	Population: DadsDiagnosis: not reportedStage of cancer: Advanced/end of lifeCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Physical, emotional, practicalImpact: Role/role loss; routines
Mackenzie, 2014, Australia	To increase understanding of how mothers diagnosed with breast cancer while in the paid workforce experience and manage their multiple demands of taking care of themselves, their children and their paid work	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: Not reportedCollege education: 50%	0–5: No6–11: Yes12–18+: Yes*	Physical, social, practicalImpact: Role/role loss; routines
Nelson, 2020, USA	To provide a contextual understanding and initial approach to addressing custody and guardianship concerns for single parents with life-limiting illness	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: Advanced/end of lifeCollege education: Not reported	0–5: No6–11: Yes12–18: Yes	PracticalImpact: None reported
Öhlén, 2006, Sweden	To describe lived experiences of being ill with breast cancer for mothers with dependent children	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: ActiveCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Emotional, psychological, social, spiritualImpact: Role/ role loss
O’Neill, 2018, Ireland	To explore the experiences of fathers diagnosed and living with cancer while also having parental responsibility for children	Qualitative	Population: DadsDiagnosis: Not reportedStage of cancer: ActiveCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, emotional, psychological, socialImpact: Role/role loss; routines
Park, 2017, USA	To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision-making and to explore whether these experiences differ by their functional status	Qualitative	Population: MixedDiagnosis: Mixed (23.8% breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 75%	0–5: No6–11: Yes12–18: Yes	Physical, emotionalImpact: Role/role loss; routines
Park, 2019, USA	To use qualitative interviews to identify and describe patterns of family response in parental advanced cancer based on the Family Management Style Framework	Mixed methods	Population: MixedDiagnosis: Mixed (24% Breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 25%	0–5: No6–11: Yes12–18: Yes	EmotionalImpact: Role/role loss, psychological function
Park, 2021, USA	To describe the challenges, approaches, and decisions related to discussing prognosis among a sample of mothers with metastatic cancer	Mixed methods	Population: MomsDiagnosis: Mixed (92% Breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	Informational, emotional, socialImpact: Role/role loss; routines
Rashi, 2015, Canada	To explore the cancer experience of parents and their perceptions of supportive strategies to assist them with illness and family-related challenges	Qualitative	Population: MixedDiagnosis: Mixed (<25% breast cancer)Stage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, informational, social, practicalImpact: Role/role loss; routines
Schiena, 2019, Australia	To explore experiences of parents and co-parents where one parent was diagnosed with cancer, impact of the disease on their role as a parent and supports found to be useful in managing the ongoing care of their children	Qualitative	Population: MixedDiagnosis: Mixed (16.7% breast cancer)Stage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Physical, informational, emotional, psychological, social, practicalImpact: Role/role loss
Semple, 2010, UK	To explore the experience of parents diagnosed with head and neck cancer who are caring for young children	Qualitative	Population: Not reportedDiagnosis: Head and neck cancerStage of cancer: SurvivorshipCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Physical, informational, emotional, psychological, social, practicalImpact: Role/role loss; shared routines
Shands, 2021, USA	To describe, from parents living with advanced cancer, the worries and concerns parents wonder their child(ren) hold, but have not spoken, about the parent’s cancer	Qualitative	Population: Not reportedDiagnosis: Mixed (51.9% breast cancer)Stage of cancer: Advanced/end of lifeCollege education: 75%	0–5: Yes6–11: Yes12–18: Yes	Informational, emotional, psychologicalImpact: Role/role loss; routines
Sheehan, 2011, USA	To develop an explanatory model that explains interaction patterns between parents with advanced cancer and their adolescent children	Qualitative	Population: MixedDiagnosis: MixedStage of cancer: Advanced/end of lifeCollege education: Not reported	0–5: No6–11: No12–18: Yes	Physical, informational, socialImpact: Role/role loss; routines
Shiino, 2020, Japan	To determine the process of patients with newly diagnosed breast cancer in Japan telling their children about the disease, and how they have thought about it after the diagnosis	Qualitative	Population: Not reportedDiagnosis: Breast cancerStage of cancer: ActiveCollege education: Not reported	0–5: Yes6–11: Yes12–18: Yes	Informational, emotional, socialImpact: None reported
Sinclair, 2019, Australia	To explore the communication and resource needs of families in which a parent was diagnosed with cancer treated with curative intent while parenting a young child (age 3–12 years)	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: SurvivorshipCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	InformationalImpact: Role/role loss
Steiner, 2020, Australia	To explore hospital-based parenting support delivery from patient and co-parent perspectives in context to their parenting experience and support needs	Qualitative	Population: MixedDiagnosis: Not reportedStage of cancer: Advanced/end of lifeCollege education: Not reported	Not reported	Physical, informational, emotional, psychological, social, spiritual, practicalImpact: Role/role loss
Stiffler, 2008, USA	To examine maternal parenting during the time when a mother is diagnosed with and treated for breast cancer from the mothers’ and adolescent daughters’ perspectives	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: SurvivorshipCollege education: Not reported	0–5: No6–11: No12–18+: Yes*	Physical, informational, emotional, psychological, social, practicalImpact: Role/role loss; shared routines, psychological function
Stinesen Kollberg, 2014, Sweden	To analyze at what time point mothers desired psychosocial support regarding the worry about their children during the year after breast cancer diagnosis and to identify any associated psychosocial factors	Mixed methods	Population: MomsDiagnosis: Breast cancerStage of cancer: MixedCollege education: 75%	0–5: Yes6–11: Yes12–18+: Yes*	Physical, emotional, psychological, social, spiritual, practicalImpact: None reported
Strickland, 2015, Canada	To report selected findings from a grounded theory study involving 18 young mothers	Qualitative	Population: MomsDiagnosis: Mixed (88.9% breast cancer)Stage of cancer: MixedCollege education: Not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, emotional, psychological, practicalImpact: Role/role loss; routines, psychological function
Tamura, 2021, Japan	To understand the subjective experience of fathers with cancer and develop care programs for fathers with cancer	Qualitative	Population: DadsDiagnosis: MixedStage of cancer: ActiveCollege education: not reported	0–5: Yes6–11: Yes12–18+: Yes*	Physical, emotional, psychological, social, practicalImpact: Role/role loss; routines
Torp, 2013, Norway	To investigate financial effects of cancer on families in which a parent has cancer and lives with his/her children, to identify financial hardship risk factors, and to describe the children’s experiences regarding the impact of cancer on their socioeconomic situation	Mixed methods	Population: Not reportedDiagnosis: Mixed (68% Breast cancer)Stage of cancer: MixedCollege education: 50%	0–5: No6–11: Yes12–18: Yes	PracticalImpact: Role/role loss; routines
Wang, 2020, China	To explore Chinese cancer parents’ perspectives toward informing children of their diseases	Qualitative	Population: MixedDiagnosis: Mixed (44.4% breast cancer)Stage of cancer: ActiveCollege education: 50%	0–5: No6–11: Yes12–18: Yes	Informational, emotionalImpact: None reported
Huang, 2017, China	To explore how Chinese mothers with breast cancer communicate about their illness with their children	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: MixedCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	InformationalImpact: None reported
Xu, 2021, China	To explore family interaction patterns among young Chinese breast cancer survivors	Qualitative	Population: MomsDiagnosis: Breast cancerStage of cancer: SurvivorshipCollege education: 50%	0–5: Yes6–11: Yes12–18: Yes	Physical, psychological, socialImpact: None reported

Parents also had at least one child also older than 18.

Nearly 60% of the studies included mixed diagnoses within the sample population, such as hematologic, prostate, colon, testicular, and ovarian. Of those studies with mixed diagnoses, greater than 50% of those studies included parents with breast cancer. Approximately 40% of the total sample exclusively included mothers with breast cancer. There was a fairly even distribution of treatment stages across studies including active treatment (9/47), survivorship (9/47), advanced disease/end of life (13/47), mixed cancer stages (13/47), and three studies did not report stage. Of those studies that reported on education (21/47), the participants were highly educated with the majority of participants having at least a college education.

Supportive care needs

Forty-five of the forty-seven (96%) articles reported various support care needs that were summarized and organized into supportive care themes. They were then quantified using frequency counts according to support needs in the Supportive Care Framework (Fitch, 2008). The remaining two articles (Buchbinder et al., 2009; Kissil et al., 2014) included in the review did not report on supportive care needs but did report on the impact of cancer on parenting. The majority of articles reported on social and emotional support care needs, followed by informational, psychological, practical, and spiritual support needs. Supportive care themes and included studies are outlined in Table 3.

Table 3.

Supportive care needs and impact on daily life.

Supportive care need	Articles
Social (31)	Arida et al. (2019), Asbury et al. (2014), Bekteshi and Kayser (2013), Check et al. (2017), Chin et al. (2021), Collaço et al. (2019), Corney et al. (2016), de Castro et al. (2018), Dencker et al. (2019), Elmberger et al. (2008), Garrard et al. (2017), Fisher and O’Connor (2012), Inhestern et al. (2021), Kenne Dornel et al. (2018), Kim et al. (2012), Loggers et al. (2019), Lundquist et al. (2020), Mackenzie (2014), Öhlén and Holm (2006), O’Neill et al. (2018), Park et al. (2021), Rashi et al. (2015), Schiena et al. (2019), Semple and McCance (2010), Sheehan and Draucker (2011), Shiino and Suzuki (2020), Steiner et al. (2020), Stiffler et al. (2008), Stinesen Kollberg et al. (2014), Tamura et al. (2021), Xu et al. (2021)
Psychological (23)	Arida et al. (2019), Bekteshi and Kayser (2013), Check et al. (2017), Chin et al. (2021), Collaço et al. (2019), Corney et al. (2016), de Castro et al. (2018), Dencker et al. (2019), Elmberger et al. (2008), Fisher and O’Connor (2012), Inhestern and Bergelt (2018), Loggers et al. (2019), Öhlén and Holm (2006), O’Neill et al. (2018), Schiena et al. (2019), Semple and McCance (2010), Shands and Lewis (2021), Steiner et al. (2020), Stiffler et al. (2008), Stinesen Kollberg et al. (2014), Strickland (2015), Tamura et al. (2021), Xu et al. (2021)
Emotional (35)	Arida et al. (2019), Asbury et al. (2014), Bekteshi and Kayser (2013), Check et al. (2017), Collaço et al. (2019), Corney et al. (2016), Davey et al. (2012), de Castro et al. (2018), Dencker et al. (2019), Elmberger et al. (2008), Garrard et al. (2017), Fisher and O’Connor (2012), Hailey et al. (2018), Inhestern and Bergelt (2018), Inhestern et al. (2021), Kim et al. (2012), Lalayiannis et al. (2018), Loggers et al. (2019), Lundquist et al. (2020), Lundquist (2017), Öhlén and Holm (2006), O’Neill et al. (2018), Park et al. (2017, 2019, 2021), Schiena et al. (2019), Semple and McCance (2010), Shands and Lewis (2021), Shiino and Suzuki (2020), Steiner et al. (2020), Stiffler et al. (2008), Stinesen Kollberg et al. (2014), Strickland (2015), Tamura et al. (2021), Wang et al. (2020)
Informational (25)	Asbury et al. (2014), Check et al. (2017), Chin et al. (2021), Collaço et al. (2019), Dencker et al. (2019), Elmberger et al. (2008), Garrard et al., (2017) Fisher and O’Connor (2012), Hailey et al. (2018), Huang et al. (2017), Inhestern and Bergelt (2018), Inhestern et al. (2021), Kenne Dornel et al. (2018), Loggers et al. (2019), Park et al. (2021), Rashi et al. (2015), Schiena et al. (2019), Semple and McCance (2010), Shands and Lewis (2021), Sheehan and Draucker (2011), Shiino and Suzuki (2020), Sinclair et al. (2019), Steiner et al. (2020), Stiffler et al. (2008), Wang et al. (2020)
Spiritual (6)	Chin et al. (2021), Dencker et al. (2019), Fisher and O’Connor (2012), Öhlén and Holm (2006), Steiner et al. (2020), Stinesen Kollberg et al. (2014)
Practical (20)	Arida et al. (2019), Check et al. (2017), de Castro et al. (2018), Elmberger et al. (2008), Garrard et al. (2017), Inhestern et al. (2021), Kim et al. (2012), Loggers et al. (2019), Lundquist (2017), Mackenzie (2014), Nelson et al. (2020), Rashi et al. (2015), Schiena et al. (2019), Semple and McCance (2010), Steiner et al. (2020), Stiffler et al. (2008), Stinesen Kollberg et al. (2014), Strickland (2015), Tamura et al. (2021), Torp et al. (2013)
Physical (28)	Arida et al. (2019), Bekteshi and Kayser (2013), Check et al. (2017), Collaço et al. (2019), Corney et al. (2016), Davey et al. (2012), de Castro et al. (2018), Dencker et al. (2019), Elmberger et al. (2008), Fisher and O’Connor (2012), Inhestern and Bergelt (2018), Kim et al. (2012), Loggers et al. (2019), Lundquist et al. (2020), Lundquist (2017), Mackenzie (2014), O’Neill et al. (2018), Park et al. (2017), Rashi et al. (2015), Schiena et al. (2019), Semple and McCance (2010), Sheehan and Draucker (2011), Steiner et al. (2020), Stiffler et al. (2008), Stinesen Kollberg et al. (2014), Strickland (2015), Tamura et al. (2021), Xu et al. (2021)
Impact	Articles
Role loss (23)	Check et al. (2017), Chin et al. (2021), Collaço et al. (2019), Corney et al. (2016), de Castro et al. (2018), Dencker et al. (2019), Elmberger et al. (2008), Fisher and O’Connor (2012), Inhestern and Bergelt (2018), Lundquist (2017), Lundquist et al. (2020), Mackenzie (2014), Öhlén and Holm (2006), O’Neill et al. (2018), Park et al. (2017, 2019), Rashi et al. (2015), Schiena et al. (2019), Semple and McCance (2010), Shands and Lewis (2021), Sheehan and Draucker (2011), Steiner et al. (2020), Tamura et al. (2021)
Shared routines (10)	Bekteshi and Kayser (2013), Davey et al. (2012), Inhestern and Bergelt (2018), Lalayiannis et al. (2018), Lundquist (2017), Semple and McCance (2010), Sheehan and Draucker (2011), Steiner et al. (2020), Stiffler et al. (2008), Torp et al. (2013)
Routines and rituals (19)	Arida et al. (2019), Buchbinder et al. (2009), Davey et al. (2012), de Castro et al. (2018), Elmberger et al. (2008), Garrard et al. (2017), Inhestern and Bergelt (2018), Kenne Dornel et al. (2018), Lundquist et al. (2020), Lundquist (2017), Mackenzie (2014), O’Neill et al. (2018), Park et al. (2017, 2021), Rashi et al. (2015), Semple and McCance (2010), Shands and Lewis (2021), Steiner et al. (2020), Strickland (2015)
Psychosocial functioning (11)	Check et al. (2017), Collaço et al. (2019), de Castro et al. (2018), Dencker et al. (2019), Kim et al. (2012), Loggers et al. (2019), Park et al. (2017), Semple and McCance (2010), Shands and Lewis (2021), Stiffler et al. (2008), Strickland (2015)

Social: Social needs are defined as “needs related to family relationships, community acceptance and involvement in relationships” (Fitch, 2008: 9). Social supportive care needs were reported in 31 (66%) articles and included needs surrounding role change and role loss, managing family and social relationships, managing the responses of others, and interpersonal communication. For example, Steiner et al. (2020) discussed the challenges of role strain and the impact of balancing self-care with parenting roles and the need for communication to negotiate role changes and co-parenting at the end of life.

Psychological: Psychological supportive care needs are defined as “needs related to the ability to cope with the illness experience and its consequences, including the need for optimal personal control and the need to experience positive self-esteem” (Fitch, 2008: 9). Psychological needs were reported in 23 (48%) articles and included needs surrounding major depression, anxiety disorder, body image and self-image, cognitive function, fear of recurrence, intimacy and sexual problems, and loss of personal control. As discussed in Loggers et al. (2019) parents reported concerns over their inability to meet parenting expectations, such as supporting the child in completing their homework, due to cognitive or physical decline.

Emotional: Emotional supportive care needs are defined as “need for a sense of comfort, belonging, understanding, reassurance in times of stress and upset” (Fitch, 2008: 9). Emotional support care needs were reported in 35 (74%) articles and included needs surrounding stress, distress, worry, fear of death, anxiety, depression, guilt, grief, loneliness, and social isolation. For example, Corney et al. (2016) found that parents of young children experienced increased stress as they sought to protect their children from the anxiety related to their treatment, which in turn caused additional stress to the parent.

Informational: Informational supportive care needs are defined as “needs for information to reduce confusion, anxiety and fear; to inform the person’s or family’s decision making; and to assist in skill acquisition” (Fitch, 2008: 9). Informational support care needs were reported in 25 (53%) articles and included needs surrounding culturally and linguistically tailored, age-appropriate information regarding disclosing cancer diagnosis and consequences to children, educational resources that focus on communication with family and children about cancer prognosis and illness trajectory as well as financial and legal issues surrounding guardianship. As discussed in Asbury et al. (2014), there is a need for age and developmentally appropriate information about cancer and the implications of the diagnosis/prognosis.

Spiritual: Spiritual supportive care needs are defined as “needs related to the meaning and purpose in life to practice religious beliefs” (Fitch, 2008: 9). Spiritual support care needs were reported in 6 (13%) articles and included needs surrounding search for meaning and existential needs and struggles. Chin et al. (2021) found that there is a need in Chinese parent’s to maintain one’s health and strong will for survival which is fundamental in maintaining “familial piety” (p. E198).

Practical: Practical supportive care needs are defined as “needs for direct assistance in order to accomplish a task or activity and thereby reduce the demands on the person” (Fitch, 2008: 9). Practical supportive care needs were reported in 20 (43%) articles and included needs surrounding performance of instrumental activities of daily living such as childcare, driving, home management, asking for and receiving assistance, employment, legal issues, including custody and guardianship, preserving child and family routines and activities and treatment-related issues such as travel time and accessibility. As discussed by Rashi et al. (2015) parents experienced challenges with transportation (inability to drive following treatment), childcare, and meal preparation and the need for support to manage their everyday needs.

Physical: Physical supportive care needs are defined as “needs for physical comfort and freedom from pain, optimum nutrition, ability to carry out one’s usual day-to-day functions” (Fitch, 2008: 9). Physical support care needs were reported in 28 (60%) articles and included needs surrounding treatment related side effects, physical decline, fertility and impotency, and activities of daily living. Specific treatment-related side effects reported included fatigue, nausea, pain, weakness, and lymphedema. For example, Arida et al. (2019) discussed the impact of physical symptoms, including fatigue, nausea, and pain, on mothers’ inability to engage in family and childcare duties.

Impact: Thirty-six of the forty-seven (77%) articles reported various impacts on occupational performance that were summarized and organized into four themes, including roles/role loss, shared routines, routines and rituals, and psychosocial functioning. Refer to Table 3 for articles included within the Impact theme.

Role loss includes difficulty adjusting to multiple roles (e.g., patient, parent, and worker) and loss of identity (e.g., parent, spouse, and family member). Within role loss, parents described challenges with maintaining parenting responsibilities, difficulty managing multiple roles and role strain, changes in or loss of parental identity, and difficulty with work–life balance.

Shared routines include routines commonly performed by parents that have been assumed by children or others. Within shared routines, parents reported the need for children to take on parenting roles and responsibilities, shifting responsibilities to the non-ill parent and extended family, and the balancing of multigenerational caring.

Routines include activities that provide a structure for everyday life, while rituals include symbolic actions that contribute to the individual’s values and beliefs (American Occupational Therapy Association, 2020). Within routines, parents reported changes or disruptions in family activities and childcare responsibilities, caregiving routines (e.g., bathing, cuddling, prioritizing child’s health over own), parenting routines (such as volunteering, helping with homework, play), and inability to work (American Occupational Therapy Association, 2020). Within rituals, parents reported changes in family rituals, such as participation in holidays and birthday parties and family meals.

Psychological functioning includes isolation, stigma, difficulty adjusting or coping, and living with the uncertainty of cancer. Within psychosocial functioning, parents reported changes or challenges in family dynamics, including withdrawal, increased strain, stress and worry, decreased quality of life, relying on children for emotional and practical support, difficulty accepting help, learning to parent through uncertainty, and stigma and culture impacting identity.

Discussion and implications

The purpose of this scoping review was threefold: (1) to understand the supportive care needs of parents living with and beyond cancer as reported by parents; (2) to understand the impact of unmet supportive care needs on daily life; and (3) to understand whose perspective has been captured in the literature.

Supportive care needs

Supportive care needs were identified across all domains of the Supportive Care Framework (Fitch, 2008) irrespective of the stage and phase of the cancer continuum with emotional support care needs most represented in the literature and practical and spiritual least represented.

Lack of adequate supportive care services tailored to the identified needs of parents can contribute to and exacerbate occupational disruption (Nizzero et al., 2017). Occupational disruption occurs when an individual’s participation in their regular, meaningful occupations, such as parenting, is altered. This change often occurs as the result of a major health concern or condition, such as cancer (Nizzero et al., 2017). To adequately meet these supportive care needs of parents living with and beyond cancer and promote occupational engagement, occupational therapy practitioners need to consider the chronicity of the cancer diagnosis and the evolving needs of clients parents across the care continuum to support full participation in daily life. This provides a unique opportunity for occupational therapy practitioners to contribute to the interprofessional supportive care of parents with cancer across the cancer continuum.

Impact of unmet supportive care needs on daily life

There is a significant impact of unmet supportive care needs on the daily life of parents living with and beyond cancer. Specifically, unmet supportive care needs were highest in those living with advanced disease or at the end of life. Unmet supportive care needs persisted with similar frequency during treatment and well into survivorship. This highlights the need for frequent, ongoing assessment of supportive care needs as parents move through the cancer experience.

As reported in this scoping review, approximately 75% of articles highlighted the occupational disruption created by cancer. Occupational therapy practitioners have addressed the occupational disruption in parents living with other chronic conditions, such as multiple sclerosis and spinal cord injury (Rider and Sleim, 2022; Walker et al., 2020). In this review, occupational disruptions were noted in routines and rituals across everyday life, such as family activities, childcare duties, changes in family rituals regardless of stage of cancer and phase of the cancer continuum. Furthermore, meaningful participation in family life is impacted by the wide range of physical, emotional, and psychological symptoms related to cancer and its treatment. Parents also noted loss of identity and difficulty managing multiple roles, such as parent, patient, worker, partner, friend, etc. that further impacts their ability to care for themselves or others. Interventions to address the unmet supportive care needs of parents living with and beyond cancer clearly fall within the scope of occupational therapy practice. Occupational therapy practitioners are well positioned to understand and address the complexity of life-threatening illness on occupational performance and participation in everyday life.

Occupational therapists have successfully adapted and utilized self-management approaches to help people living with cancer maximize their occupational performance (Newman et al., 2019). A self-management approach in cancer allows for an acknowledgment of its chronic nature and supports individuals in their ability to manage medical aspects of the illness (e.g., fatigue, pain, neuropathy, and cognitive dysfunction), life roles (e.g., parent), and psychological consequences of chronic illness (e.g., cancer) (McCorkle et al., 2011).

Perspectives represented in the literature

An international perspective on supportive care needs of parents living with and beyond cancer was represented in this review as reported above. However, there is a lack of representation from developing or least-developed countries. A majority of the studies were from urban, highly resourced countries that may not be representative of the larger population. Most studies focused on White, well-educated mothers living with and beyond breast cancer. While fathers were included in several studies with mixed samples of mothers and fathers, there were only four articles that focused exclusively on the supportive care needs of fathers. Supportive care needs and challenges persisted across all age categories; however, parents with the youngest children (0–5) were least represented in the literature. This may suggest the need for further study of parents with young children.

Implications

Based on the results of this review, occupational therapy practitioners can support the needs of parents living with and beyond cancer by addressing the supportive care needs experienced across the continuum of cancer care from diagnosis, through treatment to survivorship or end of life. Through a holistic family centered lens, occupational therapy practitioners can provide culturally responsive and tailored care that addresses the multiple roles of parents as they manage their illness and caregiving and parenting responsibilities. Occupational therapy practitioners can have a significant impact on the physical, emotional, psychological, social, practical, informational, and spiritual supportive care needs of survivors of cancer across cancer continuum. Frequent screening (e.g., treatment side effects such as pain, neuropathy, fatigue, and cognitive dysfunction) may be required through the cancer experience as supportive care needs change or evolve to promote occupational performance. Future research should focus on the development of person and family centered, culturally responsive, and developmentally appropriate interventions to meet the needs of parents. There is a great need to elicit the perspectives of parents from underserved populations and from geographic regions that are underrepresented in the literature inclusive of a range of educational levels, socioeconomic status, and cancer diagnoses.

Limitations

This review presents with a number of limitations. Only articles published in English were included and gray literature was excluded from review. The lack of perspectives from developing and least-developed countries may limit generalizability of findings. Furthermore, the majority of studies focused on perspectives of well-educated mothers living with and beyond breast cancer, potentially limiting generalizability across cancer populations. Additionally, there was a lack of representation of fathers within the literature, potentially limiting generalizability of findings. Nevertheless, there is consistency in the findings across studies that provide insight into the unmet supportive care needs of parents living with and beyond cancer regardless of cancer stage and the potential role for occupational therapy.

Conclusion

The results from this review highlight the range of reported supportive care needs of parents living with and beyond cancer through the voices of parents. These unmet needs may lead to occupational disruption; challenging parents to find ways to meet their own needs while managing the needs of others. Regardless of cancer types, stages and phases of the cancer continuum, supportive care needs persist. This provides a unique opportunity for occupational therapy practitioners to contribute to the occupational needs of parents living with and beyond cancer as an integral member of the interprofessional cancer care team.

Key findings

Supportive care needs persist regardless of cancer types, stages, and phases of the cancer continuum.

Unmet supportive care needs may contribute to occupational disruption.

What the study has added

This review highlights the potential role of occupational therapy practitioners in addressing the unmet supportive care needs and their impact on parents living with and beyond cancer.

Supplemental Material

sj-docx-1-bjo-10.1177_03080226231183281 – Supplemental material for Parents living with and beyond cancer: A scoping review of unmet supportive care needs and impact on daily life

Supplemental material, sj-docx-1-bjo-10.1177_03080226231183281 for Parents living with and beyond cancer: A scoping review of unmet supportive care needs and impact on daily life by Robin Newman, Jennifer Kaldenberg, Laura Stursberg, Brianna Pinto, Christine Jimenez and Kara Glazer in British Journal of Occupational Therapy

Footnotes

Acknowledgements

We wish to thank Kate Silfen for her assistance with the literature search.

Research ethics

Not applicable.

Consent

Not applicable.

Patient and public involvement data

During the development, progress, and reporting of the submitted research, Patient and Public Involvement in the research was not included at any stage of the research.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) declared no financial support for the research, authorship, and/or publication of this article.

Contributorship

All authors researched the literature and contributed to the methodology of the project and data analysis. Robin Newman and Jennifer Kaldenberg wrote the first draft of the manuscript. All authors interpreted the data, reviewed, and edited the manuscript and approved the final version.

ORCID iDs

Robin Newman

Jennifer Kaldenberg

Supplemental material

Supplemental material for this article is available online.

References

American Occupational Therapy Association (2020) Occupational therapy practice framework: Domain and process (4th edition). American Journal of Occupational Therapy 74(Suppl 2): 7412410010. https://doi.org/10.5014/ajot.2020.74S2001

Arida

Bressler

Moran

, et al. (2019) Mothering with advanced ovarian cancer: ‘You’ve got to find that little thing that’s going to make you strong’. Cancer Nursing 42: 54–60.

Arksey

O’Malley

(2005) Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology 8: 19–32.

Asbury

Lalayiannis

Walshe

(2014) How do I tell the children? Women’s experiences of sharing information about breast cancer diagnosis and treatment. European Journal of Oncology Nursing 18: 564–570.

Bekteshi

Kayser

(2013) When a mother has cancer: Pathways to relational growth for mothers and daughters coping with cancer. Psychooncology 22: 2379–2385.

Buchbinder

Longhofer

McCue

(2009) Family routines and rituals when a parent has cancer. Families, Systems & Health: The Journal of Collaborative Family HealthCare 27: 213–227.

Caparso

Appel

Benkert

(2021) Dying concerns in young parents with advanced cancer (PWAC): A scoping review. Palliative and Supportive Care 19: 93–102.

Check

Park

Reeder-Hayes

, et al. (2017) Concerns underlying treatment preferences of advanced cancer patients with children. Psycho-Oncology 26: 1491–1497.

Chin

Chang

Lin

(2021) Maternal experiences of parenting young children while battling breast cancer in Taiwan. Cancer Nursing 44: 193–200.

10.

Collaço

Wagland

Alexis

, et al. (2019) The challenges on the family unit faced by younger couples affected by prostate cancer: A qualitative study. Psycho-Oncology 28: 329–335.

11.

Corney

Puthussery

Swinglehurst

(2016) Couple relationships in families with dependent children after a diagnosis of maternal breast cancer in the United Kingdom: Perspectives from mothers and fathers. Journal of Psychosocial Oncology 34: 413–431.

12.

Davey

Niño

Kissil

, et al. (2012) African American parents’ experiences navigating breast cancer while caring for their children. Qualitative Health Research 22: 1260–1270.

13.

de Castro

Dornel

ALK

de Sousa

(2018) The experience of motherhood during cancer treatment. Psicologia em Estudo 23: 1–16.

14.

Dencker

Murray

Mason

, et al. (2019) Disrupted biographies and balancing identities: A qualitative study of cancer patients’ communication with healthcare professionals about dependent children. European Journal of Cancer Care 28: e12991.

15.

Elmberger

Bolund

Magnusson

, et al. (2008) Being a mother with cancer: achieving a sense of balance in the transition process. Cancer Nursing 31: 58–66.

16.

Fernandes

Muller

Rodin

(2012) Predictors of parenting stress in patients with haematological cancer. Journal of Psychosocial Oncology 30: 81–96.

17.

Fisher

O’Connor

(2012) “Motherhood” in the context of living with breast cancer. Cancer Nursing 35: 157–163.

18.

Fitch

(2008) Supportive care framework. Canadian Oncology Nursing Journal 18: 6–14.

19.

Garrard

Fennell

Wilson

(2017) ‘We’re completely back to normal, but I’d say it’s a new normal’: A qualitative exploration of adaptive functioning in rural families following a parental cancer diagnosis. Supportive Care in Cancer 25: 3561–3568.

20.

Hackett

Cook

(2016) Occupational therapists’ perceptions of how they support the parenting role of mental health service users who have children. Occupational Therapy in Mental Health 32: 32–49.

21.

Hailey

Yopp

Deal

, et al. (2018) Communication with children about a parent’s advanced cancer and measures of parental anxiety and depression: A cross-sectional mixed-methods study. Supportive Care in Cancer 26: 287–295.

22.

Hong

Pluye

Fabregues

, et al. (2018) Mixed method appraisal tool (MMAT) Version 2018. Copyright (#1148552), Canadian Intellectual Property Office, Industry Canada.

23.

Huang

O’Connor

, et al. (2017) Communication about maternal breast cancer with children: A qualitative study. Cancer Nursing 40: 445–453.

24.

Inhestern

Bergelt

(2018) When a mother has cancer: strains and resources of affected families from the mother’s and father’s perspective – a qualitative study. BMC Women’s Health 18: 72.

25.

Inhestern

Johannsen

Bergelt

(2021) Families affected by parental cancer: Quality of life, impact on children and psychosocial care needs. Front Psychiatry 12: 765327.

26.

Johannsen

Brandt

Frerichs

, et al. (2022) The impact of cancer on the mental health of patients parenting minor children: A systematic review of quantitative evidence. Psycho-Oncology 31: 869–878.

27.

Kenne Dornel

Alves de Souza

de Castro

(2018) To disclose or not to disclose? Communication between mothers with cancer and their young children. Psicooncologia 15: 237–248.

28.

Kim

Jun

(2012) The impact of breast cancer on mother-child relationships in Korea. Psycho-Oncology 21: 640–646.

29.

Kissil

Niño

Ingram

, et al. (2014) ‘I knew from day one that I’m either gonna fight this thing or be defeated’: African American parents’ experiences of coping with breast cancer. Journal of Family Nursing 20: 98–119.

30.

Kuswanto

Stafford

Sharp

, et al. (2018) Psychological distress, role, and identity changes in mothers following a diagnosis of cancer: A systematic review. Psycho-Oncology 27: 2700–2708.

31.

Lalayiannis

Asbury

Dyson

, et al. (2018) How do women with secondary breast cancer experience telling their adolescent children about their diagnosis? Journal of Health Psychology 23: 1223–1233.

32.

Levac

Colquhoun

Brien

KKO

(2010) Scoping studies: Advancing the methodology. Implementation Science 5: 1–9.

33.

Lim

YZG

Honey

McGrath

(2022) The parenting occupations and purposes conceptual framework: A scoping review of ‘doing’ parenting. Australian Occupational Therapy Journal 69: 98–111.

34.

Loggers

Kirtane

Palacios

, et al. (2019) Leaving footprints, not scars: A qualitative pilot study of Hispanic mothers’ willingness to communicate with dependent children about an advanced cancer diagnosis. Supportive Care in Cancer 27: 1573–1578.

35.

Lundquist

Berry

Boltz

, et al. (2020) I’m still mom: Young mothers living with advanced breast cancer. Oncology Nursing Forum 47: 405–414.

36.

Lundquist

(2017) Fathers facing advanced cancer: An exploratory study. Journal of Social Work in End-of-Life & Palliative Care 13: 266–283.

37.

Mackenzie

(2014) ‘It is hard for mums to put themselves first’: How mothers diagnosed with breast cancer manage the sociological boundaries between paid work, family and caring for the self. Social Science & Medicine 117: 96–106.

38.

Matuszczak-Świgoń

Bakiera

(2021) Experiences of adults as parents with cancer: a systematic review and thematic synthesis of qualitative studies. Journal of Psychosocial Oncology 39: 765–788.

39.

McCorkle

Ercolano

Lazenby

, et al. (2011) Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA: A Cancer Journal for Clinicians 61: 50–62.

40.

Moher

Liberati

Tetzlaff

, et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS medicine 6(7): e1000097. https://doi.org/10.1371/journal.pmed.1000097

41.

Moore

Rauch

Baer

, et al. (2015) Parenting changes in adults with cancer. Cancer 121: 3547–3557.

42.

Nelson

Stanton

Bowers

, et al. (2020) Addressing child custody concerns of parents with life-limiting illness. Journal of Palliative Medicine 23: 1134–1138.

43.

Newman

Lyons

Coster

, et al. (2019) Feasibility, acceptability and potential effectiveness of an occupation-focused cognitive self-management program for breast cancer survivors. British Journal of Occupational Therapy 82: 604–611.

44.

Nizzero

Cote

Cramm

(2017) Occupational disruption: A scoping review. Journal of Occupational Science 24: 114–127.

45.

No Author (2020) Occupational therapy practice framework: Domain and process—fourth edition. The American Journal of Occupational Therapy, 74: 7412410010p1–7412410010p87.

46.

Öhlén

Holm

(2006) Transforming desolation into consolation: being a mother with life-threatening breast cancer. Health Care for Women International 27: 18–44.

47.

O’Neill

McCaughan

Semple

, et al. (2018) Fathers’ experiences of living with cancer: A phenomenological study. European Journal of Cancer Care 27: 1–10.

48.

Park

Check

Song

M-K

, et al. (2017) Parenting while living with advanced cancer: A qualitative study. Palliative Medicine 31: 231–238.

49.

Park

Miller

Knafl

(2019) Understanding familial response to parental advanced cancer using the Family Management Style Framework. Journal of Psychosocial Oncology 37: 758–776.

50.

Park

Jensen

Song

, et al. (2021) Talking with children about prognosis: The decisions and experiences of mothers with metastatic cancer. JCO Oncology Practice 17: 840–847.

51.

Rashi

Wittman

Tsimicalis

, et al. (2015) Balancing illness and parental demands: Coping with cancer while raising minor children. Oncology Nursing Forum 42: 337–344.

52.

Rider

Selim

(2022) Supporting the role of parenting for people with multiple sclerosis: A guide for clinicians. Archives of Physical Medicine and Rehabilitation 103: 1891–1894.

53.

Schiena

Hocking

Joubert

, et al. (2019) An exploratory needs analysis of parents diagnosed with cancer. Australian Social Work 72: 325–335.

54.

Semple

McCance

(2010) Experience of parents with head and neck cancer who are caring for young children. Journal of Advanced Nursing 66: 1280–1290.

55.

Shands

Lewis

(2021) Parents with advanced cancer: Worries about their children’s unspoken concerns. American Journal of Hospice Palliative Care 38: 920–926.

56.

Sheehan

Draucker

(2011) Interaction patterns between parents with advanced cancer and their adolescent children. Psycho-Oncology 20: 1108–1115.

57.

Shiino

Suzuki

(2020) Process of patients telling children about newly diagnosed breast cancer. Open Journal of Nursing 10: 598–612.

58.

Sinclair

Schofield

Turner

, et al. (2019) Maternal breast cancer and communicating with children: A qualitative exploration of what resources mothers want and what health professionals provide. European Journal of Cancer Care 28: e13153.

59.

Steiner

Joubert

Shlonsky

, et al. (2020) Australian hospital-based parenting support for adults with incurable end-stage cancer: Parent perspectives. Journal of Evidence-Based Social Work 17: 172–190.

60.

Stiffler

Haase

Hosei

, et al. (2008) Parenting experiences with adolescent daughters when mothers have breast cancer. Oncology Nursing Forum 35: 113–120.

61.

Stinesen Kollberg

Wilderäng

Möller

, et al. (2014) Worrying about one’s children after breast cancer diagnosis: Desired timing of psychosocial intervention. Supportive Care in Cancer 22: 2987–2995.

62.

Strickland

(2015) Young mothers’ engagement with the cancer care system. Canadian Oncology Nursing Journal 25: 270–280.

63.

Tamura

Yamazaki

Uchibori

(2021) ‘I’ll try my best to be a dad’: The experiences of Japanese fathers with cancer. Global Qualitative Nursing Research 8: 2333393620975739.

64.

Tavares

Brandão

Matos

(2018) Mothers with breast cancer: A mixed-method systematic review on the impact on the parent-child relationship. Psycho-Oncology 27: 367–375.

65.

Torp

Thoresen

Grønningsæter

, et al. (2013) Financial and social effects on children and adolescents when a parent is diagnosed with cancer. Child & Adolescent Social Work Journal 30: 293–310.

66.

Tricco

Lillie

Zarin

, et al. (2018) PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine 169: 467–473.

67.

Walker

Holowatuk

Dashner

(2020) Pilot study of a self-management program for parents with spinal cord injury or disease. American Journal of Occupational Therapy 75: 7501205070p1.

68.

Wang

Arber

Shen

, et al. (2020) Perspectives of Chinese cancer patients toward disclosure of cancer diagnosis to their minor children. Cancer Nursing 43: 2–11.

69.

Wang

Chen

, et al. (2021) Family interaction among young Chinese breast cancer survivors. BMC Family Practice 22: 122.

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