13 Caregiving Burden and Unmet Support Needs in Chinese Caregivers and Cancer Patients

Abstract Introduction Cancer burden continues to rise globally and locally. Due to the shift of the cancer care from the hospital to the community, many cancer patients requiring needs in palliative care from their informal caregivers. Many caregivers often taking up the important roles and responsibilities but their own needs are largely neglected, and hence may induce caregiving burden. This study aims to explore the relationships of caregiving burden with unmet support needs in both cancer patients and their caregivers. Method A convenience sample of 280 patient-caregiver dyads was recruited from the oncology outpatient clinic of two hospitals in Hong Kong between April and June 2018. Among them, 258 (92.1%) patient-caregiver dyads provided complete information on unmet supportive care needs (Patient: the 34-item SCNS-SF34-C, Caregivers: the 26-item SPUNS-SF), and caregiving burden (Caregiver Strain Index). Results Among the patients, their mean age was 60.8 (SD = 13.6) and 66% were female. Among the caregivers, their mean age was 49.3 (SD = 14.6), 67.2% were female, and 38.2% were children of the patient. Mean level caregiving burden in caregivers was 4.87 (SD = 3.75) out of a range 0–13. Regression analysis showed that higher caregiving burden was associated significantly with higher caregiver’s unmet support in personal and emotional needs (βstd = 0.348) and future concerns (βstd = 0.204), and patient’s unmet support in physical and daily living needs (βstd = 0.201), but lower caregiver’s unmet support in information needs (βstd = −0.233) after controlling for age, gender, and education level of both patients and caregivers. Conclusions The findings shed lights in designing interventions aim at reducing caregiving burden by targeting caregiver’s unmet support in personal and emotional need and those caregivers are taking care of cancer patients with unmet support in physical and daily living needs. However, the finding on caregiver’s unmet support in information needs was a protective factor of caregiving burden warrants further exploration.

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A qualitative approach in determining the patient-centered information and supportive care needs of cancer patients in Singapore

BMJ Open ◽

10.1136/bmjopen-2019-034178 ◽

2020 ◽

Vol 10 (2) ◽

pp. e034178

Author(s):

Gek Phin Chua ◽

Hiang Khoon Tan

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Quantitative Study ◽

Information Needs ◽

Supportive Care Needs ◽

Research Approach ◽

Detailed Knowledge ◽

Care Needs ◽

Treatment Unit ◽

Ambulatory Treatment

ObjectivesTo qualitatively interpret the information and supportive care needs perceived by cancer patients undergoing treatment in order to get a deeper appreciation of patients’ needs and concerns. The intended outcome is to provide baseline knowledge for improving patient-centred strategies to better meet the information and supportive needs of patients.DesignA qualitative research approach, based on conventional content analysis, was used throughout the research process. The three open-ended questions obtained from a previous quantitative study guided the researchers to explore the information and supportive care needs of patients. Data from patients’ responses were analysed and coded in themes.Participants and settingPatients attending the Ambulatory Treatment Unit of the National Cancer Centre Singapore were invited to participate in the study. We determined from these subjects the type of information that cancer patients need, and to measure the extent to which these information needs are met by measuring patients’ level of satisfaction. Included in the quantitative study were three open-ended questions designed to gain a deeper understanding of their needs and concerns. All subjects were aged 21 years and above and able to understand and communicate in English/Mandarin. They were also aware of their diagnosis, they were not cognitively impaired and were not at the end-of-life situation.ResultsA variety of information and supportive care needs were identified, and three specific areas of concerns were identified: (1) psychosocial and supportive care needs, (2) information needs and (3) information delivery by professionals.ConclusionThe information and supportive care needs expressed were consistent with issues of cancer patients undergoing treatment. The strategies to improve patients’ coping abilities through patient-centred care are discussed. Further studies assessing the barriers of information provision by healthcare professionals should provide more detailed knowledge about unmet information needs.

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‘Haematological cancers, they’re a funny bunch’: A qualitative study of non-Hodgkin’s lymphoma patient experiences of unmet supportive care needs

Journal of Health Psychology ◽

10.1177/1359105316660179 ◽

2016 ◽

Vol 23 (11) ◽

pp. 1464-1475 ◽

Cited By ~ 4

Author(s):

Brooke Swash ◽

Nick Hulbert-Williams ◽

Ros Bramwell

Keyword(s):

Qualitative Study ◽

Supportive Care ◽

Cancer Patients ◽

Hodgkin’S Lymphoma ◽

Information Needs ◽

Supportive Care Needs ◽

Hodgkin's Lymphoma ◽

Care Needs ◽

Non Hodgkin’S Lymphoma ◽

Non Hodgkin's Lymphoma

Despite high levels of psychological distress, there is a scarcity of research on unmet supportive care needs in haematological cancer patients. This qualitative study used an in-depth interpretative phenomenological approach to investigate the needs reported by six non-Hodgkin’s lymphoma patients and explored how these needs consequently shaped the patient experience. Emergent themes included the following: concerns for family, information needs and the need for psychological support. Participants reported feeling different to other cancer patients. Lack of understanding of their diagnosis by friends and family and lack of access to relevant support services are notable unmet needs that differ from previous findings.

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Identifying cancer patients’ care needs after discharge hospital using health claim data linked with Hospital-based Cancer Registry data in Japan.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e18012 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e18012-e18012

Author(s):

Ayako Okuyama ◽

Yukie Takemura ◽

Takahiro Higashi

Keyword(s):

Cancer Patients ◽

Cancer Registry ◽

Cancer Care ◽

Daily Living ◽

Continuous Treatment ◽

Care Needs ◽

Discharge Data ◽

Control Plan

e18012 Background: In 2018, the 3rd Cancer Control Plan developed in Japan. This plan recommends that we should create a better society for cancer patients to keep living at their homes after leaving hospital. In order to grasp the continuous health care needs, we investigated independence degree of Activities of Daily Living (ADL) at the time of discharge for cancer patients by hospital types. Methods: We analyzed the health insurance claims database linked with the hospital-based cancer registry of 230 cancer care hospitals covered the period from October 2012 to December 2014. Data were abstracted from patients who 1) were diagnosed with breast, lung, liver, colorectal, stomach, pancreas, or prostate cancer in 2013; 2) were 20 years or older at the time of the diagnosis; and 3) received the first course or continuous treatment at the hospital. Ministry of Health, Labor and Welfare designates cancer care hospitals (DCCHs) to provide a high quality of cancer care. In each prefecture, one hospital is designated as Type 1 DCCH, and it has the role of supporting other DCCHs in that prefecture. Remaining DCCHs are Type 2 DCCHs. Hospitals which are not designated as DCCHs are categorized into other hospitals. We assessed the differences of patient’ ADL status by these hospital types. Results: We extracted 37,523 patients’ discharge data (8,271 from Type 1 DCCHs, 28,200 from Type 2 DCCHs, and 1,052 from other hospitals). The mean age (SD) at the time of diagnosis was 65.6 (11.7) at Type 1 DCCHs, 69.1 (11.0) at Type 2 DCCHs, and 70.0 (12.3) at other hospitals. The percentage of clinical stage IV in other hospitals (25.3%) was slightly higher than others (22.5%). In total, 16.2% of patients need all assistance for bathing, while only 3.5% of patients need all assistance for eating. More patients at other hospitals were need assistance for ADL compared to patients at DCCHs. For example, 10.6% of patients need all assistance for bathing in type 1 DCCHs, while 25.2% of patients need it in other hospitals. Conclusions: Many patients discharged in not DCCHs need more assistance for their daily living. We should take these situation into account when we provide appropriate support for cancer patients.

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Examining the information and support needs of first-degree relatives of breast cancer patients

Proceedings of Singapore Healthcare ◽

10.1177/2010105818824613 ◽

2019 ◽

Vol 28 (3) ◽

pp. 203-207

Author(s):

Fazila Aloweni ◽

Saraswathi Nagalingam ◽

Bernice Shi Ling Yong ◽

Norasyikin Hassan ◽

Suet Mei Chew

Keyword(s):

Breast Cancer ◽

Family History ◽

Cancer Patients ◽

Health Care Professionals ◽

Information Needs ◽

Survey Study ◽

Support Needs ◽

Breast Cancer Patients ◽

Early Screening ◽

First Degree Relatives

Women with a family history of breast cancer, specifically among first-degree relatives (FDRs) such as daughter, mother and sister, face a two-fold higher risk of getting breast cancer than women with no family history. Current literature highlighted that these FDRs’ needs for factual information and emotional support were poorly met. Owing to a lack of local research, this cross-sectional survey study aimed to identify the information and support needs of FDRs of breast cancer women, their risk perception and self-care practices. Forty-one FDRs of breast cancer patients were recruited via convenience sampling. They completed a questionnaire comprising primarily the Information and Support Needs Questionnaire (ISNQ). In general they perceived information needs to be more important than support needs. The most important need identified was “information about breast cancer treatment.” Overall, only a few participants perceived that their needs were “met fully” both for information ( n = 2, 4.9%) and support needs ( n = 3, 7.3%). Breast screening examination (BSE) adherence was low; only eight FDRs (19.5%) performed monthly BSE. They expressed the need to receive guidance from health care professionals on the proper techniques of BSE. In conclusion, the findings underscored the need for effective avenues to empower FDRs with information and support so they can better support themselves and their loved ones. This is essential to help them cope with the cancer diagnosis of their loved ones, while simultaneously engaging in early screening and health-promoting measures toward betterment of their own quality of life and health outcomes.

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Unmet supportive care needs and associated factors among young adult cancer patients in Japan

BMC Cancer ◽

10.1186/s12885-020-07721-4 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Masako Okamura ◽

Maiko Fujimori ◽

Ayako Sato ◽

Yosuke Uchitomi

Keyword(s):

Young Adult ◽

Supportive Care ◽

Cancer Patients ◽

Associated Factors ◽

Information Needs ◽

Unmet Needs ◽

Psychological Needs ◽

Supportive Care Needs ◽

Care Needs ◽

Young Adult Cancer

Abstract Background Young adult cancer patients often face unique challenges and have potential unmet needs. This study aimed (1) to describe unmet supportive care needs among young adults with cancer in Japan, and (2) to identify its associated factors. Methods In a cross-sectional web-based survey, 206 young adults with cancer were assessed for supportive care needs. Multiple regression analysis examined whether demographics, clinical variables and social support were associated with unmet supportive care needs. Results A total of 206 patients (180 female) with a mean age of 33.7 years (SD = 4.3, range: 22–39) participated. One hundred and fifty-eight participants (76.7%) reported at least one unmet supportive care needs. The top 20 unmet needs included 9 of the 10 psychological needs, 3 of the 5 physical and daily living needs, 8 of the 11 health system and information needs and 1 of the 5 sexuality needs. Multiple regression analysis revealed that perceived poorer PS, experience of change in work/school after a cancer diagnosis and poor social support were significantly associated with higher supportive care needs. The total score of supportive care needs was significantly associated with both psychological distress and QOL. Conclusions More than 70% of young adult cancer patients reported unmet supportive care needs and most of those were psychological needs. The findings suggest potential opportunities for intervention in addressing psychological needs rather than physical and information needs.

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Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs

Frontiers in Psychiatry ◽

10.3389/fpsyt.2021.765327 ◽

2021 ◽

Vol 12 ◽

Author(s):

Laura Inhestern ◽

Lene Marie Johannsen ◽

Corinna Bergelt

Keyword(s):

Quality Of Life ◽

Cancer Patients ◽

Support Needs ◽

Life Questionnaire ◽

Parental Cancer ◽

Psychosocial Needs ◽

Care Needs ◽

Minor Children ◽

The Impact

Parental cancer poses major challenges for families with minor children. Due to diagnosis and treatment family life is disrupted. To prevent long-term consequences in all family members and to design needs-oriented family-centered interventions, further understanding of the family's situation including the impact on the children, quality of life levels and the parental psychosocial needs is necessary. This study aims at investigating the impact of parental cancer on the minor children, family-specific psychosocial needs and quality of life levels of parents and children. Cancer patients parenting at least 1 minor child (<18 years) were eligible for study participation. In total, n=86 cancer patients under treatment participated in the study. After excluding participants without a minor child, 78 patients remained for analyses. We assessed children's quality of life using the parent proxy version of the KIDSCREEN-10 and parental quality of life using the EORTC QLQ C30 quality of life questionnaire. Additionally, the questionnaire comprised open questions about positive and negative changes parents perceived in their children as well as questions on specific family- and child-related psychosocial needs. The majority of participants were mothers (91%), mainly diagnosed with breast cancer (59%). The participating parents provided data on 117 minor children. Parents mentioned positive changes in 38% of the children (e.g., being more attentive and helpful). Negative changes were reported in 37% of the children (e.g., being more anxious and clingy). Parents reported family-specific psychosocial supportive care needs for themselves as a parent (e.g., support regarding parenting concerns), support needs for the partner or the children. Moreover, parents expressed family-related information needs and needs regarding practical aspects (e.g., childcare, household help). Global quality of life was M = 55.7 (SD = 23.4) for parents and M = 57.5 (SD = 15.5) for children. Pearson's correlation coefficient between parental and children's quality of life was 0.377 (p < 0.001). To identify parents with cancer and children in need for additional support, health care providers should proactively inquire about the impact of the disease on the children. In terms of a comprehensive cancer care, the direct assessment of family impact and family-specific support needs in cancer patients with minor children allows for needs-based allocation to support offers.

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Identification of supportive care needs in a sample of Puerto Rican cancer patients with the Supportive Care Needs Survey-34 (SCNS-34)

Journal of Clinical Oncology ◽

10.1200/jco.2009.27.15_suppl.e20697 ◽

2009 ◽

Vol 27 (15_suppl) ◽

pp. e20697-e20697

Author(s):

V. Gonzalez ◽

M. Velez ◽

E. Pedro ◽

C. Cruz ◽

M. Cotto ◽

...

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Health System ◽

Puerto Rican ◽

Cancer Patients ◽

Clinical Data ◽

Daily Living ◽

Supportive Care Needs ◽

Care Needs ◽

Perceived Needs

e20697 Background: The assessment of supportive care needs is important in the management of cancer patients. The Supportive Care Needs Survey (SCNS-34) was administered to a population of Puerto Rican cancer patients to assess their perceived needs in five domains (psychological, health system and information, physical and daily living, patient care and support, and sexuality.) Methods: Patients attending the surgical, radiation and medical oncology clinics at the Puerto Rico Medical Center participated in the study. After informed consent, patients completed the Spanish- Puerto Rican translation of the SCNS-34. A second instrument to measure the quality of the SCNS-34 was administered. Demographic and clinical data was obtained from medical records. Descriptive, univariate and multivariate analysis was performed to assess correlation between reported needs and demographic and clinical data. To assess the validity and consistency of the Spanish Puerto Rican translation of the SCNS-34, the Cronbach's alpha test was used. Results: A total of 103 patients participated in the study (female n=66; male n=37). Median age was 54 years. The most common malignancies were breast cancer (29 patients), gynecologic cancers (22 patients), prostate cancer (17 patients) and gastrointestinal cancers (14 patients). The overall internal consistency of the instrument was 0.882. Patients perceived needs were highest in the domains of sexuality (67%), physical and daily living (55.3%), and psychological (38.8%). Logistic regression analysis demonstrated that younger age was an independent predictor of perceived needs in the psychologic domain (p=0.010). Also, a diagnosis of breast cancer was a significant predictor of perceived needs in the health system and information domain (p=0.020). Being a female was correlated with reporting needs in the domain of physical and daily living (p=0.009). Educated patients were more prone to perceive needs in the domains of sexuality (p=0.045). Conclusions: The Spanish- Puerto Rican translation of the Supportive Care Needs Survey (SCNS-34) showed satisfactory internal consistency and validity. The supportive care needs of Puerto Ricans cancer patients seem to be affected by age, gender, and cancer site. No significant financial relationships to disclose.

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Application Application Of Problems And Needs In Palliative Care Instrument - Short Version (PNPC-Sv) For Assessing The Paliative Care Needs For Cancer Patients

Nurse and Health: Jurnal Keperawatan ◽

10.36720/nhjk.v10i2.274 ◽

2021 ◽

Vol 10 (2) ◽

Author(s):

Ratih Ayuningtyas Pocerattu ◽

Anggorowati ◽

Chandra Bagus

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Cancer Patients ◽

Information Needs ◽

Physical Symptoms ◽

Short Version ◽

Care Needs ◽

Study Approach ◽

The Right

Background: Assessment of the needs of palliative care is the first step to know about the picture quality of life and determine interventions to solve problems experienced by patients with chronic conditions and terminal. One of the instruments that can be used is the PROBLEMS AND NEEDS IN PALLIATIVE CARE INSTRUMENT - SHORT VERSION (PNPC-sv). Instrument PNPC-sv examines the 8 dimensions of activity and excersice, physical symptoms, autonomy, psychological, spiritual, financial, and information needs. Methods: This research uses qualitative method with case study approach. Data collection was conducted by means of questionnaires filled in the assessment of the needs of palliative care (PNPC-SV), then performed in-depth interviews in accordance with the results of the assessment and observation on the 6 participants in the space of oncology in one of hospital in Semarang. Result: The theme results of this research are: (1) Self-acceptance as well as support to the family of the condition of the patient, (2) Influence the patient's psychological to the social environment, (3) the right education to improve the quality of life and (4) The basic components assessment of the needs palliative care should be assessed by the nurse. Conclusion: The assessment which done in a holistic manner can help the nurse to provide nursing care in accordance with the needs of the patient to face the condition of the disease. The needs of the patient in physical, psychological, social and spiritual is very necessary to maintain the balance of her consistency and integrity in the ability to remain accepted, loved and appreciated by others. Keywords: The need for palliative care, PNPC-SV, cancer patients.

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Is There a Difference in Unmet Supportive Care Needs Between Older and Younger Outpatients Receiving Chemotherapy?

Journal of Palliative Care ◽

10.1177/08258597211044248 ◽

2021 ◽

pp. 082585972110442

Author(s):

İrem Ayvat ◽

Azize Atli Ozbas

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Older Patients ◽

Information Needs ◽

Supportive Care Needs ◽

Cancer Type ◽

Care Needs ◽

Treatment Unit ◽

Younger Patients ◽

Age Related

Objective: This study investigated whether there was a difference in unmet supportive care needs between older and younger cancer patients who receive chemotherapy. Background: Physiological, physical, cognitive, and social functions, which play a key role in coping with cancer, are impaired due to aging. Age-related physiological changes and psychosocial factors and comorbid medical conditions make some of the needs of older cancer patients unique and complex. At the heart of meeting these needs lies the concept of supportive care. First step of meeting their needs is to determine these needs. Study Design and Methods: The study was conducted in the Daytime Treatment Unit of the oncology hospital of a university in Ankara, Turkey. The study sample consisted of 93 patients aged 65 years or older and 93 patients under 65 years of age. Both groups were similar in terms of sex, cancer type, and chemotherapy protocols. Data were collected using a Patient Information Form and Supportive Care Needs Scale-Short Turkish Version and analyzed using descriptive statistics, Mann–Whitney U test, Kruskal–Wallis H test, and Bonferroni correction. Results: Participants had a median total score of 1.92. Their “daily life needs” and “sexuality needs” subscale scores were highest and lowest, respectively. Older patients had lower median total scores than younger patients. Younger patients had higher median “health care and information needs” and “sexuality needs” subscale scores than older patients. Conclusion: Elderly patients reported fewer unmet needs than younger patients. This may be due to age-related cultural factors as they may have difficulty expressing their needs. Implications: Results suggest to focus on the fact that patients' needs change with age and that they have difficulty expressing their needs.

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The prevalence and nature of supportive care needs in lung cancer patients

Current Oncology ◽

10.3747/co.23.3012 ◽

2016 ◽

Vol 23 (4) ◽

pp. 258 ◽

Cited By ~ 20

Author(s):

M.E. Giuliani ◽

R.A. Milne ◽

M. Puts ◽

L.R. Sampson ◽

J.Y.Y. Kwan ◽

...

Keyword(s):

Lung Cancer ◽

Supportive Care ◽

Cancer Patients ◽

Information Needs ◽

Unmet Needs ◽

Short Form ◽

Multivariable Analysis ◽

Supportive Care Needs ◽

Care Needs ◽

Lung Cancer Patients

PurposeIn the present work, we set out to comprehensively describe the unmet supportive care and information needs of lung cancer patients.Methods This cross-sectional study used the Supportive Care Needs Survey Short Form 34 (34 items) and an informational needs survey (8 items). Patients with primary lung cancer in any phase of survivorship were included. Demographic data and treatment details were collected from the medical charts of participants. The unmet needs were determined overall and by domain. Univariable and multivariable regression analyses were performed to determine factors associated with greater unmet needs.Results From August 2013 to February 2014, 89 patients [44 (49%) men; median age: 71 years (range: 44–89 years)] were recruited. The mean number of unmet needs was 8 (range: 0–34), and 69 patients (78%) reported at least 1 unmet need. The need proportions by domain were 52% health system and information, 66% psychological, 58% physical, 24% patient care, and 20% sexuality. The top 2 unmet needs were “fears of the cancer spreading” [n = 44 of 84 (52%)] and “lack of energy/tiredness” [n = 42 of 88 (48%)]. On multivariable analysis, more advanced disease and higher MD Anderson Symptom Inventory scores were associated with increased unmet needs. Patients reported that the most desired information needs were those for information on managing symptoms such as fatigue (78%), shortness of breath (77%), and cough (63%).Conclusions Unmet supportive care needs are common in lung cancer patients, with some patients experiencing a very high number of unmet needs. Further work is needed to develop resources to address those needs.

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