Psychometric evaluation of the Chinese version of the supportive care needs survey for caregivers of children with Paediatric cancer (SCNS‐C‐Ped‐C)

Abstract

Aim

To revise the Supportive Care Needs Survey for Partners and Caregivers of Cancer Patients (SCNS‐P&C) and evaluate the psychometric properties of the Chinese Version of the Supportive Care Needs Survey for Caregivers of Children with Paediatric Cancer (SCNS‐C‐Ped‐C) in caregivers of children with paediatric cancer.

Design

A cross sectional design was used.

Methods

In this methodological research, the reliability and validity of the SCNS‐C‐Ped‐C were measured by a questionnaire survey among 336 caregivers of children with paediatric cancer in China. The construct validity was evaluated by exploratory factor analysis and internal consistency was examined by Cronbach's alpha, split‐half reliability, and corrected item‐to‐total correlation coefficients.

Results

The exploratory factor analysis revealed six factors consist of: Healthcare and Informational Needs, Daily Care and Communication Needs, Psychological and Spiritual Needs, Medical Service Needs, Economic Needs, and Emotional Needs, explaining 65.615% of the variance. The Cronbach's alpha was 0.968 at full scale and 0.603–0.952 on the six domains. The split‐half reliability coefficient was 0.883 at full scale and 0.659–0.931 on the six domains.

Conclusions

The SCNS‐C‐Ped‐C demonstrated both reliability and validity. It can be used to evaluate multi‐dimensional supportive care needs for caregivers of children with paediatric cancer in China.

1. BACKGROUND

Cancer has become the leading cause of death in children worldwide since 2016, and the recorded incidence of paediatric cancer is increasing with time (Bray et al., 2018; Kyu et al., 2018). Among children between the age of 0 and 14 years old, the most common cancer was leukaemia, followed by central nervous system tumours and lymphoma (Steliarova‐Foucher et al., 2017). The causes of paediatric cancer were commonly unknown, only approximately 5% of the childhood cancer are of hereditary origin, and ionizing radiation (the only ascertained environmental carcinogen) (Wild et al., 2020, Feb). However, the process of the diagnosis and treatment of paediatric cancer has led to a significant decrease in the death rate among paediatric patients and their 5‐year survival rates have exceeded 80% in developed countries (Bhakta et al., 2019; Ward et al., 2019; Yeh et al., 2020).

The painful and complex treatment of paediatric cancer may gravely affect the mental status, quality of life, and health behaviour of children and their caregivers (Cho et al., 2020; Musiol et al., 2019). Children are living through various discomforts raised from the disease and prolonged treatment (Berger et al., 2015). Caregivers play a critical role in children's symptom and emotional management, financial and social support, and all‐around healthcare throughout the illness trajectory (Wang et al., 2017). However, for caregivers without professional skills, looking after children with paediatric cancer is an unusual and effort‐taking experience and most caregivers seek assistance to meet their supportive care needs (Wang et al., 2018; Wang, Wang, et al., 2016; Wang, Yao, et al., 2016).

Supportive care refers to care that helps patients with cancer and their families deal with the disease and its treatment (Cho & Yoo, 2020). Earlier studies have shown that most caregivers of children with paediatric cancer reveal a range of unmet needs, including information, psychological, work, and social needs (Aziza et al., 2019; Lyu et al., 2019). Furthermore, caring for children with paediatric cancer can be stressful with a high medical cost, expenses of caregiving for the children, and the change in caregivers' employment status following the diagnosis of children's cancer (Tsimicalis et al., 2020).

The multiple and complex duties arising from the child's disease result in many challenges that caregivers need to address (Modanloo et al., 2015). It is important to provide targeted interventions to support caregivers, which may lead to an enhanced quality of life in caregivers as well as an improved quality of child care (Farnia et al., 2015; Pelentsov et al., 2016). The first step in providing appropriate support to caregivers of children with paediatric cancer is recognizing their supportive care needs. Despite the importance of caregivers' supportive care needs assessment, only several qualitative studies were conducted to explore caregivers' needs or experience (He et al., 2022; Yamaji et al., 2022), while few quantitative research was done in China, which can be due to the lack of appropriate tools to assess the needs of caregivers of children with paediatric cancer.

There are several instruments to assess caregivers' needs for patients with cancer, such as Supportive Care Needs Survey for Partners and Caregivers of Cancer Patients (SCNS‐P&C) (Girgis et al., 2011), Family Inventory of Needs (FIN) (Kristjanson et al., 1995), Cancer Support Person's Unmet Needs Survey (SPUNS) (Campbell et al., 2009), Needs Assessment of Family Caregivers‐Cancer (NAFC‐C) (Kim et al., 2010). However, they can not be used directly in the population of caregivers of children with paediatric cancer. There are limited instruments to assess the need of caregivers of children with paediatric cancer. The Farsi version of FIN was developed and evaluated in parents of children with cancer from paediatric oncology referral centres in five cities of Iran (Mojen et al., 2021). An online survey to assess the supportive care needs of parents with a child with a rare disease was conducted in Australia and New Zealand by a self‐designed questionnaire consisting of 45 questions (108 items) (Pelentsov et al., 2016). However, this questionnaire is not specifically designed for caregivers of children with cancer.

SCNS‐P&C was originally developed by Girgis based on the supportive care needs survey (SCNS) (Girgis et al., 2011), which can promisingly assess the multi‐dimensional supportive care needs of caregivers of patients with cancer across the illness trajectory (Girgis et al., 2011). The initial English version of SCNS‐P&C is composed of 44 items implementing a 5‐score rating scale (1 ‘No Need‐Not applicable’ to 5 ‘Some Need‐High’), with a higher score implying more needs for supportive care. The SCNS‐P&C consists of 4 domains: health care service needs, psychological and emotional needs, work and social needs, and information needs. SCNS‐P&C was rigorously validated among 547 cancer caregivers and excellent internal consistency was found among Cronbach's alpha of each domain ranging from 0.88 to 0.94. The SCNS‐P&C has a good theoretical basis, which promotes its applications in many countries, such as China (Liu et al., 2020; Niu et al., 2015), France (Baudry et al., 2019), Turkey (Ergen & Arikan, 2020), Germany (Sklenarova et al., 2015). SCNS‐P&C is widely used around the world. It also matches our aim to develop an instrument to assess the supportive care needs in Chinese caregivers of children with paediatric cancer. So we choose to revise SCNS‐P&C to make it suitable for measuring caregivers' supportive care needs.

Liu J et al (Liu et al., 2020) translated the initial English version of the SCNS‐P&C into Chinese and tested its psychometric attributes within mainland China. The SCNS‐P&C‐C is made up of 45 items and 4 domains: communication and relationship needs, health care service and information needs, social and work needs, and psychological and emotional needs. The SCNS‐P&C‐C was validated among 498 caregivers of hospitalized patients with cancer from oncology units in three tertiary public hospitals in Hefei, mainland China. The results indicated the SCNS‐P&C‐C also had decent internal consistency with Cronbach's alpha coefficients 0.94 at full scale and ranged from 0.79 to 0.89 for the four domains (Liu et al., 2020). It was unveiled to be reliable and valid to evaluate the supportive care needs for partners and caregivers of Chinese patients with cancer (Liu et al., 2020).

Niu AF et al (Niu et al., 2015) revised the traditional Chinese version of the SCNS‐P&C translated by Qiu XC (Qiu, 2009) into the simplified Chinese version. The simplified Chinese version of the SCNS‐P&C is comprised of 38 items and six domains: information needs, healthcare needs, everyday needs, economic needs, communication/interpersonal needs and psychological/emotional needs. The simplified Chinese version of the SCNS‐P&C was validated among 449 caregivers of patients with cancer in five tertiary public hospitals in Xi'an city, mainland China. The internal consistency coefficient is 0.961 at full scale and ranges from 0.69 to 0.90 on the 6 domains. The simplified Chinese version of the SCNS‐P&C is reliable and valid and it can be adopted to assess the supportive care needs of caregivers of patients with cancer in China.

However, no existing studies used the SCNS‐P&C to investigate the supportive care needs in caregivers of children with paediatric cancer in China. In the present study, the SCNS‐P&C was revised based on the characteristics of caregivers of children with paediatric cancer in China, and formed the Chinese Version of the Supportive Care Needs Survey for Caregivers of Children with Paediatric Cancer (SCNS‐C‐Ped‐C). The psychometric evaluation of SCNS‐C‐Ped‐C was conducted. This tool will help healthcare providers to identify the supportive care needs in caregivers of children with paediatric cancer in China and provide tailored interventions to caregivers with unmet supportive care needs.

2. METHODS

This methodological research was carried out in three children's hospitals in China from May 2018 to February 2019.

2.1. Participants

The convenience sampling method was adopted in this cross‐sectional study. A total of 336 caregivers of hospitalized children with paediatric cancer were recruited in three tertiary children's hospitals from Shanghai, Suzhou and Chongqing, China. Caregivers who satisfied the criteria were considered eligible: (1) the child met the diagnostic criteria for cancer; (2) the child was under treatment and did not suffer from other severe or chronic diseases; (3) the child was <15 years old; (4) the caregiver undertook the main responsibility of the child's daily caregiving; (5) the caregiver was capable of communicating and reading on their own; (6) the caregiver volunteered for the survey. The hired caregiver was excluded from this study.

2.2. Instruments

2.2.1. Socio‐demographic and clinical characteristics

The socio‐demographic and clinical characteristics of caregivers and their children with paediatric cancer were collected by a self‐designed questionnaire. The information included (1) caregivers' gender, age, education, marital status, residency area, hospital near residency area, average monthly household income, type of medical payment, daily caregiving time and number of co‐caregivers; (2) children's gender, age, single child and treatment duration.

2.2.2. Revision process of SCNS‐C‐Ped‐C

Permission and authorization were obtained from the original author (A. Girgis) to revise the SCNS‐P&C. There were already two simplified Chinese versions of SCNS‐P&C (Liu et al., 2020; Niu et al., 2015), so we did not translate and back‐translate the scale in our study. The scale was revised by a revision team consisting of eight bilingual experts (three paediatric cancer clinical nursing experts, two senior nursing experts, and three paediatric cancer healthcare researchers) to make it suitable to measure supportive care needs for caregivers of children with cancer. Based on the characteristics of caregivers of children with paediatric cancer, the original SCNS‐P&C and two Chinese versions of the SCNS‐P&C by Liu J (Liu et al., 2020) and Niu A (Niu et al., 2015), the scale revision team held an expert group meeting to discuss and revise the scale, so as to form the first draft of the SCNS‐C‐Ped‐C, which was suitable for caregivers of children with paediatric cancer.

2.2.3. Content validity and cognitive evaluation

The SCNS‐C‐Ped‐C was psychometrically evaluated by measuring the content validity and performing the cognitive assessment. In order to evaluate the content validity, the scale revision team were asked to express their opinions on the compatibility of the items with the cultural circumstances of China in the expert group meeting. To assess formal validity and cognitive evaluation, 19 caregivers with different levels of education from a children's hospital in Shanghai were surveyed in a pilot test to evaluate the understandability of each item. The scale was modified according to the questions and feedback from caregivers. The 45‐item SCNS‐C‐Ped‐C had been completed and was intended to be fluent and understandable.

2.2.4. Construct validity

The exploratory factor analysis (EFA) was conducted to examine the construct validity of the scale. The Kaiser‐Meyer‐Olkin (KMO) value (acceptable value: >0.80) and the Bartlett tests (acceptable value: p < 0.01) were performed prior to EFA to justify the appropriateness of the factor analysis. EFA using principal component analysis with varimax rotation was conducted to determine the factor structure of the scale. Factor loading >0.40 and eigenvalue >1.00 were eligible (Cong et al., 2020; Pett et al., 2003; Tabachnick & Fidell, 2001).

2.3. Reliability

Cronbach's alpha, split‐half reliability and corrected item‐to‐total correlation coefficients were utilized to test the internal consistency to assess the scale's reliability, and alpha >0.70 was considered to be acceptable (Devellis, 2003). SPSS version 22.0 was adopted for statistical analyses. p value of <0.05 was regarded as statistically significant.

2.4. Data collection

With permission from the research ethics committee approval, trained researchers surveyed the eligible caregivers of children with paediatric cancer. All caregivers were given relevant information regarding the study both in written and verbal. At an appropriate time, when caregivers were physically and mentally prepared enough, the caregivers were provided with guidance on how to fill out the questionnaires. After the informed consent was signed, the questionnaires were completed by caregivers independently. It cost approximately 5–10 min for caregivers to finalize the SCNS‐C‐Ped‐C.

2.5. Ethics

Ethical review approval was obtained from the Naval Medical University (NO.HJEC‐2018‐YF‐001). After obtaining the research committee ethics approval, the trained researchers introduced this research's purposes and methods to the eligible caregivers. The caregivers were also ensured of data confidentiality and the right to withdraw from the research at any stage of the research. The written informed consent was obtained from the caregivers.

3. RESULTS

3.1. Participants' characteristics

Among the 360 potentially eligible caregivers of children with paediatric cancer, 17 sent back invalid questionnaires and 7 rejected to participate. Totally, 336 caregivers were considered eligible in this survey. Table 1 showed the socio‐demographic and clinical characteristics of caregivers and their children.

TABLE 1.

Sample characteristics (n = 336).

Characteristics	Frequency (%)
Gender
Male	96 (28.6)
Female	240 (71.4)
Age
≤30	101 (30.1)
31–40	195 (58.0)
>40	40 (11.9)
Marital Status
Married	320 (95.2)
Unmarried (Divorced or widowed or separated)	16 (4.8)
Education
High school	145 (43.2)
Junior college	93 (27.6)
Bachelor's degree or above	98 (29.2)
Residency area
City	161 (47.9)
Country	175 (52.1)
Hospital near residency area
Yes	87 (25.9)
No	249 (74.1)
Type of medical payment
Self‐pay	100 (29.8)
Medical health insurance	83 (24.7)
Rural cooperative health care insurance	140 (41.7)
Other	13 (3.8)
Average monthly household income
2000‐5000CNY ($285–713)	183 (54.5)
5000‐8000CNY ($713–1411)	68 (20.2)
Over 8000CNY (over $1411)	85 (25.3)
Daily caregiving time
<12 h	102 (30.4)
12‐18 h	53 (15.8)
18‐24 h	181 (53.8)
Number of co‐caregivers
0	15 (4.5)
1	182 (54.2)
2	106 (31.5)
3 or more	33 (9.8)
Gender of child
Boy	180 (53.6)
Girl	156 (46.4)
Age of child
<3	103 (30.7)
3–6	131 (39.0)
7 or more	102 (30.3)
Single child
Yes	135 (40.2)
No	201 (59.8)
Treatment duration
1–3 months	174 (51.8)
4–8 months	80 (23.8)
9 months or more	82 (24.4)
Disease diagnosis
Acute lymphoblastic leukaemia	280 (83.3)
Acute myeloid leukaemia	14 (4.2)
Other leukaemia	3 (0.9)
Hodgkin's lymphoma	2 (0.6)
Non‐Hodgkinlymphoma	3 (0.9)
Other lymphoma	1 (0.3)
Nervous system neoplasms	15 (4.5)
Hepatoblastoma	6 (1.8)
Embryoma of kidney	3 (0.9)
Embryoma of pancreas	2 (0.6)
Other embryoma of parenchymal organs	1 (0.3)
Rhabdomyosarcoma	3 (0.9)
Osteosarcoma	1 (0.3)
Urogenital Neoplasms	1 (0.3)
Other gastrointestinal mesenchymal tumour	1 (0.3)

3.2. Content validity and cognitive evaluation

When the scale was discussed in the expert group meeting for cultural appropriateness, based on the expert opinions, the word “patient” or “the patient I take care of” in the two Chinese versions was changed to “child”, so as to be more suitable for the caregivers of children with cancer and not cause too much stimulation to the caregivers. In addition, the expert group adjusted the language for some items that are difficult to understand. For example, item 19 “Practical caring tasks” in the English version of SCNS‐P&C, Liu J et al. translated as “giving practical help to patients, such as bathing, dressing changing or drug administration”, and Niu A et al. translated it as “providing practical care for patients, such as bathing, dressing changing or assisting in drug administration”. The above Chinese translations all make the item “Practical caring tasks” easier to understand. This item in our study was translated as “providing practical care for the child, such as bathing, changing clothes or assisting in taking medicine”. All the experts agreed that the adjustments in our study did not change the meaning of the items, but made the items easier to understand and applicable to the caregivers of children with peadiatric cancer in China. All the experts also agreed with the items' necessity and relevancy.

Regarding the cognitive evaluation by the 19 caregivers, the items and their concepts were comprehensible and understandable to the caregivers and no changes were necessary according to them. Therefore, no changes were made.

3.3. Construct validity

The KMO index was 0.953 and the Bartlett's test was significant (p < 0.01), indicating the condition was fulfilled for EFA. The principal components analysis with the varimax rotation was conducted to identify the potential factors and item loading. The factor loadings of items 14, 15, 17, 19, 39, 43 and 44 were cross‐loaded with more than one factor. Based on the contents of the cross‐loaded items, the decision of their attribution to the domains was made (Yekaninejad et al., 2015). Item 20 was extracted because it was divided into a single domain, explaining 65.615% of the variance.

Forty‐four items demonstrated factor loading between 0.421 and 0.817 for the SCNS‐C‐Ped‐C, which exceeded the acceptable level. Considering both the contents and the value of factor loading of the items, 44 items were attributed to six domains: healthcare and informational needs (items 1–10, 13, 16, 18), daily care and communication needs (items 14–15, 17, 19, 21–22, 25–35), psychological and spiritual needs (items 39–45), medical service needs (items 11–12), economic needs (items 23–24), emotional needs (items 36–38). The factor loadings of the SCNS‐C‐Ped‐C are demonstrated in Table 2.

TABLE 2.

Corrected item‐to‐total correlation and factor loading of items in the SCNS‐C‐Ped‐C (n = 336).

Item number and description	Corrected item‐to‐total correlation	Factor loading
Domain 1: Healthcare and informational needs
1. Information carer needs	0.622	0.698
2. Information prognosis	0.618	0.794
3. Information support services	0.646	0.700
4. Information alternative therapies	0.506	0.657
5. Information child physical needs	0.681	0.638
6. Information for decision making	0.613	0.807
7. Best medical care child	0.667	0.753
8. Access local health services	0.661	0.710
9. Involved in child care	0.712	0.720
10. Discuss concern with doctor	0.656	0.706
13. Complaints regarding care addressed	0.734	0.602
16. Pain control for child	0.724	0.534
18. Fertility problems in child	0.644	0.571
Domain 2: Daily care and communication needs
14. Reduce stress for child	0.727	0.499
15. Look after own health	0.584	0.469
17. Fears about child deterioration	0.726	0.464
19. Practical caring tasks	0.729	0.494
21. Changes to child's life/work	0.726	0.560
22. Life/work changes for carer	0.657	0.495
25. Access legal services	0.655	0.494
26. Communicate with child	0.741	0.793
27. Communicate with family	0.747	0.816
28. Support from family	0.734	0.759
29. Talk to other cancer carers	0.748	0.690
30. Discuss cancer at work/socially	0.715	0.650
31. Concerns about recurrence	0.637	0.470
32. Impact on relationship with child	0.732	0.705
33. Understand child experience	0.738	0.582
34. Balancing own and child's needs	0.768	0.697
35. Changes in child's body	0.781	0.663
Domain 3: Psychological and spiritual needs
39. Feelings about death	0.496	0.654
40. Not acknowledging impact of caring	0.674	0.572
41. Recovery not as expected	0.596	0.748
42. Decision making in uncertainty	0.627	0.663
43. Own spiritual beliefs	0.577	0.435
44. Meaning in patient's illness	0.716	0.557
45. Opportunities to participate in decision making	0.691	0.421
Domain 4: Medical service needs
11. Doctor coordinated care	0.616	0.776
12. Case manager coordinated services	0.618	0.798
Domain 5: Economic needs
23. Financial/government support	0.557	0.691
24. Insurance for patient	0.436	0.817
Domain 6: Emotional needs
36. Problems with sex life	0.390	0.768
37. Emotional support for self	0.573	0.712
38. Emotional support for loved ones	0.624	0.563

3.4. Reliability

The Cronbach's alpha coefficient for the total scale was 0.968, ranging from 0.603 to 0.952 for the six domains, and the split‐half reliability coefficient was 0.883 in the total scale and in‐between 0.659 and 0.931 with the six domains, indicating satisfactory internal consistency (Table 3). The corrected item‐to‐total correlations signalled significantly high correlations (r = 0.390–0.781).

TABLE 3.

Internal consistency of the SCNS‐C‐Ped‐C (n = 336).

Internal consistency	Cronbach's α	Split‐half reliability
Total scale	0.968	0.883
Healthcare and informational needs	0.939	0.902
Daily care and communication needs	0.952	0.931
Psychological and spiritual needs	0.863	0.831
Medical service needs	0.909	0.909
Economic needs	0.603	0.659
Emotional needs	0.814	0.817

4. DISCUSSION

In this study, the SCNS‐C‐Ped‐C is a valid and reliable tool to assess supportive care needs in caregivers of children with paediatric cancer in clinical practice in China. The validity of the SCNS‐C‐Ped‐C has been demonstrated with construct validity. Based on the results of the item analysis and EFA, item 20 “accessible hospital parking” fall into a single factor, and was deleted. In China, the resources for the diagnosis and treatment of paediatric cancer are relatively concentrated, and most hospitals are located in large cities. The children's hospitals we conducted this study were three top‐level children's hospitals in China. In this study, 249 (74.1%) children's residency areas were far from the hospitals, even not in the same city or province. Most of the children came to the hospitals by train or plane, while only quite a few of them by self‐driving. This may be the reason the caregivers did not have an urgent need for “accessible hospital parking”. So item 20 was deleted.

Six domains accounted for 65.615% of the variance using principal component analysis, which was higher than the two Chinese versions of the SCNS‐P&C by Liu J (57.443%) and Niu A (62.05%), and the German version of the SCNS‐P&C (58.8%), but lower than the French version of the SCNS‐P&C (82.65%).

Six domains were determined in the SCNS‐C‐Ped‐C: Healthcare and Informational Needs, Daily Care and Communication Needs, Psychological and Spiritual Needs, Medical Service Needs, Economic Needs, and Emotional Needs. The supportive care needs in caregivers of children with paediatric cancer are, to some degree, different from those in caregivers of adult patients with cancer. The caregivers in our study were mostly parents of the children. Caregivers of children with cancer most frequently sought general medical information about their child's disease and healthcare service. The parents who took the major responsibility of taking care of the sick children, need to be involved in decision‐making related to their child's treatment and to understand the risks and side effects (Liu et al., 2022; Pearson et al., 2022). So in the SCNS‐C‐Ped‐C, the Healthcare and Informational Needs domain was identified, including caregivers' information needs of healthcare, disease, treatment, et al.

Moreover, caregivers had little information about the paediatric cancer and how to take care of their sick children. Caregivers paid as much as their attention to the children in daily caregiving (Y. Wang, Wang, et al., 2016). They perceived daily care information by communicating with healthcare providers and other caregivers, and searching online and books. Parents reported that the clarity of the information and the manner in which the daily care information was communicated influenced their trust in healthcare professionals and their needs of care (Levi et al., 2000; Washington et al., 2019). So the related items were identified as the domain of Daily Care and Communication Needs.

In the framework of supportive care needs, there were six categories including physical, informational, psychosocial, emotional, practical and spiritual needs (Fitch, 1994). The diagnosis of paediatric cancer in their children was a shock for the whole family, especially for the parents, so they face emotional, psychological, and spiritual challenges in coping with their child's illness (Carlsson et al., 2019; Doumit et al., 2019; Rosenberg et al., 2013). In this study, the psychological needs and spiritual needs items were combined as “Psychological and Spiritual Needs”, the reason might be that most Chinese caregivers have no religion, so their spiritual needs were not high, and the spiritual needs were related to psychological needs in Chinese caregivers (Zhao & Zhang, 2014). The emotional needs were separated from Psychological Needs, which were “Psychological and Emotional Needs” in SCNS‐P&C by Girgis A and SCNS‐P&C‐C by Liu J. The reason might be that caregivers of children with cancer, especially parents of children with cancer, experienced high emotional burdens, such as fear, uncertainty powerlessness, denial, stress, sadness, et al (Molinaro & Fletcher, 2018; Ozdemir Koyu & Tas Arslan, 2021; Shokri et al., 2020). They had emotional needs themselves, and they also had to provide emotional support to the sick child and other family members. So the three items were identified as “Emotional Needs”.

Last but not the least, parents have also attempted to get the best medical service, and pay for the expense of the treatment. So they had medical service needs and economic needs. The two items of “Doctor coordinated care” and “Case manager coordinated services” were identified as Medical Service Needs. In China, caregivers and patients did not have too much right to speech and choice in how the medical service was conducted, because the medical team in the hospitals had a relatively fixed service mode. The cost of treatment of paediatric cancer is high, so the two items of financial/government support and insurance were identified as Economic Needs.

The differences between the Chinese and English versions were not surprising because supportive needs can be influenced by an individual's cultural and social background and the relationship between patients and caregivers. In the initial English version of the SCNS‐P&C, items 18, 19, 24 and 25 were deleted because more than 90% of participants reported ‘no need’ responses. However, participants in our study responded to the 4 items with ‘no need’ accounted for 14.3%, 34.8%, 22.0% and 40.0%, respectively, so the 4 items were retained.

In this study, six domains were built on the basis of the factor loadings and the content of items. For example, item 23 “Financial/government support” and item 24 “Insurance for patient” fall into a single factor and were indeed related to the economy, so this domain was named as “economic needs”, which is consistent with the findings of Niu A et al (Niu et al., 2015). Unlike the English version of SCNS‐P&C and the two Chinese versions of the SCNS‐P&C scale, item 11 “Doctor coordinated care” and item 12 “Case manager coordinated services” fall into a single factor, which this study named the “Medical Service Needs”.

In addition, cross‐loadings existed in items 14, 15, 17, 19, 39, 43 and 44. For items 15 and 43, they were included in the domains with the lower factor loading. Item 15 “Look after own health” was included in “Daily Care and Communication Needs”, despite greater loading on the “Medical Service Needs”. The reason is that “Medical Service Needs” has two items and the main emphasis of this domain is on the medical service for children with paediatric cancer. Item 43 “Own spiritual beliefs” was included in “Psychological and Spiritual Needs” based on the content of the item, despite greater loading on the “Emotional Needs”, as conceptually this item was developed to evaluate the spiritual needs of caregivers.

The internal consistency of the SCNS‐C‐Ped‐C was upheld by adequate Cronbach alpha coefficients, which were 0.968 at the full scale and 0.603–0.952 on the six domains. The reliability values demonstrated in this study were a little higher than those in the studies developed in Australia (Girgis et al., 2011), Germany (Sklenarova et al., 2015) and China (Liu et al., 2020; Niu et al., 2015) that focused on caregivers of cancer patients. Each item and the full scale showed significantly high correlations, indicating that relative homogeneity existed among the items in the scale and the SCNS‐C‐Ped‐C had good stability.

5. LIMITATIONS

The limitations of this study are listed as followed. First, only caregivers of children with paediatric cancer in three tertiary children's hospitals were investigated and caregivers of children with leukaemia accounted for the majority of the sample, which could limit the generalizability of the results. Further studies could expand the study population to increase the representativeness of the sample. Secondly, the convenience sampling method was adopted in this research, which may give rise to sampling bias. Thirdly, the caregivers in this study are educated caregivers with high school or higher education level, which may bring the bios of the results. Finally, this study was a cross‐sectional study with data collected at a single point in time, the test–retest reliability was not evaluated in this study. So further study is still needed to determine whether the instrument can predict the outcomes longitudinally.

6. CONCLUSIONS

The study has demonstrated that the SCNS‐C‐Ped‐C is reliable and valid in assessing the multi‐dimensional supportive care needs for caregivers of children with paediatric cancer. This is the only study that revised the SCNS‐P&C and made it a reliable and valid tool to detect the supportive care needs in caregivers of children with paediatric cancer. The SCNS‐C‐Ped‐C will contribute to assess the supportive care needs and improve the development and implementation of intervention projects to meet these supportive care needs in caregivers of children with paediatric cancer in China.

CONFLICT OF INTEREST STATEMENT

The authors declare that they have no conflict of interest.

ETHICAL STATEMENT

The Medical Research Ethics Committee of the Naval Medical University approved this study (NO.HJEC‐2018‐YF‐001).

Wang, J. , Bi, X. , Zhang, S. , Wang, Y. , Wu, H. , Yang, Q. , Ma, L. , & Yuan, C. (2023). Psychometric evaluation of the Chinese version of the supportive care needs survey for caregivers of children with Paediatric cancer (SCNS‐C‐Ped‐C). Nursing Open, 10, 4196–4204. 10.1002/nop2.1703

DATA AVAILABILITY STATEMENT

The lead author affirms that this manuscript is an honest, accurate, and transparent account of the study being reported. Relevant patient‐level data, a full dataset, and statistical analyses are available from the corresponding author upon reasonable request.