Mediating role of self-efficacy between unmet needs and quality of life in palliative cancer caregivers.

OBJECTIVE: Although unmet support needs are associated with health-related quality of life (HRQOL) in cancer caregivers, little is known about the mechanism underlying the relationship between two variables. The self-efficacy (SE) theory and literature suggest that caregiving SE is important in the perception of and reaction to caregiving demands, which in turn affects HRQOL. The aim of this study was to examine whether caregiving SE mediates the relationship between unmet support needs and HRQOL in family caregivers of palliative cancer patients. METHODS: This secondary analysis used the data from 125 family caregivers of palliative cancer patients who were recruited from two public hospitals in Hong Kong. The caregivers completed a survey questionnaire that covered socio-demographic characteristics, unmet support needs, caregiving SE, and HRQOL. Parallel mediation analyses were conducted via SPSS PROCESS macro (Model 4) to test the hypothesized models. RESULTS: The direct effect of unmet support needs on mental HRQOL was significant (effect = -0.49, 95% CI = -0.06 to -0.92). For the indirect effect, only caregiving SE in the domain of 'care for the care recipient' mediated the relationship between unmet support needs and mental HRQOL (effect = -0.32, 95% CI = -0.08 to -0.59). CONCLUSION: The findings suggest that caregiving SE may function as a mechanism through which unmet support needs influence mental HRQOL in family caregivers of palliative cancer patients. Healthcare providers should consider developing supportive care interventions to improve caregivers' HRQOL by incorporating effective strategies to enhance SE and reduce unmet needs for this population.

The effects of a family-centered psychosocial-based nutrition intervention in patients with advanced cancer: the PiCNIC2 pilot randomised controlled trial.

BACKGROUND: Malnutrition in advanced cancer patients is common but limited and inconclusive data exists on the effectiveness of nutrition interventions. Feasibility and acceptability of a novel family-based nutritional psychosocial intervention were established recently. The aims of this present study were to assess the feasibility of undertaking a randomised controlled trial of the latter intervention, to pilot test outcome measures and to explore preliminary outcomes. METHODS: Pilot randomised controlled trial recruiting advanced cancer patients and family caregivers in Australia and Hong Kong. Participants were randomised and assigned to one of two groups, either a family-centered nutritional intervention or the control group receiving usual care only. The intervention provided 2-3 h of direct dietitian contact time with patients and family members over a 4-6-week period. During the intervention, issues with nutrition impact symptoms and food or eating-related psychosocial concerns were addressed through nutrition counselling, with a focus on improving nutrition-related communication between the dyads and setting nutritional goals. Feasibility assessment included recruitment, consent rate, retention rate, and acceptability of assessment tools. Validated nutritional and quality of life self-reported measures were used to collect patient and caregiver outcome data, including the 3-day food diary, the Patient-Generated Subjective Global Assessment Short Form, the Functional Assessment Anorexia/Cachexia scale, Eating-related Distress or Enjoyment, and measures of self-efficacy, carers' distress, anxiety and depression. RESULTS: Seventy-four patients and 54 family caregivers participated in the study. Recruitment was challenging, and for every patient agreeing to participate, 14-31 patients had to be screened. The consent rate was 44% in patients and 55% in caregivers. Only half the participants completed the trial's final assessment. The data showed promise for some patient outcomes in the intervention group, particularly with improvements in eating-related distress (p = 0.046 in the Australian data; p = 0.07 in the Hong Kong data), eating-related enjoyment (p = 0.024, Hong Kong data) and quality of life (p = 0.045, Australian data). Energy and protein intake also increased in a clinically meaningful way. Caregiver data on eating-related distress, anxiety, depression and caregiving burden, however, showed little or no change. CONCLUSIONS: Despite challenges with participant recruitment, the intervention demonstrates good potential to have positive effects on patients' nutritional status and eating-related distress. The results of this trial warrant a larger and fully-powered trial to ascertain the effectiveness of this intervention. TRIAL REGISTRATION: The trial was registered with the Australian & New Zealand Clinical Trials Registry, registration number ACTRN12618001352291 .

Reliability, validity and acceptability of the traditional Chinese version of the carer support needs assessment tool in Hong Kong palliative care settings.

BACKGROUND: Among the few existing needs assessment tools for family carers, the 14-item Carer Support Needs Assessment Tool (CSNAT) is the only brief and holistic needs screening tool designed for everyday use in palliative care practices. The aim of this study was to evaluate the reliability, validity, and acceptability of the traditional Chinese version of the CSNAT in palliative care settings in Hong Kong. METHODS: This adopted a cross-sectional and correlation design with repeated measures. The participants were 125 family carers of palliative cancer patients and 10 healthcare providers (HCPs) that were recruited from two local hospitals. The evaluation of psychometric properties included the following: (1) content validity through HCPs including frontline physicians, nurses, social workers, and clinical psychologists; (2) construct validity between the CSNAT items and those of the validated tools that measured caregiver burden, social support, and caregiving self-efficacy; and (3) one-week test-retest reliability in a sub-sample of 81 caregivers. The acceptability of the tool was assessed by the carers using several closed-ended questions. RESULTS: The content validity index of the CSNAT at the scale level was 0.98. Each item of the CSNAT was significantly and moderately correlated with caregiver burden (Spearman's r = 0.24 to 0.50) and caregiving self-efficacy (r = - 0.21 to - 0.52), but not for social support. All CSNAT items had fair to moderate test-retest reliability (weighted kappa = 0.21 to 0.48), with the exception of two items "managing your relatives' symptoms, including giving medicines" and "having time for yourself in the day". Regarding the acceptability of the CSNAT, almost all HCPs were willing to use the CSNAT for carer assessment and support. 89.6% of the carers demonstrated a comprehensibility of the CSNAT tool and 92.9% felt comfortable answering the questions. Around 90% of the carers agreed to use the tool for screening, discussing needs, and making referrals. CONCLUSION: The traditional Chinese version of the CSNAT is a tool with high validity and acceptability and adequate reliability that measures family carers' support needs, which should be considered for wide application in local palliative care practices.

Partnering with families to promote nutrition in cancer care: feasibility and acceptability of the PIcNIC intervention.

BACKGROUND: Malnutrition is frequent in patients with cancer, particularly those in advanced stages of the disease. The aim of the present study was to test the feasibility of a family-centred nutritional intervention, based on the Family Systems theory and past research. METHODS: This was a single-arm trial assessing feasibility (eligibility, recruitment and retention rates); acceptability by patients, family caregivers and health professionals; intervention fidelity, and energy/protein intake (in one site only). Two sites were involved; one each in Australia (AUS) and Hong Kong (HK), with one site delivering the intervention to oncology patients receiving curative treatments in the hospital, and the other to advanced cancer patients in the home. RESULTS: The sample included 53 patients (23 from AUS and 30 from HK), 22 caregivers (3 from AUS and 19 from HK) and 30 health professionals (20 from AUS and 10 from HK). Recruitment was difficult in the acute inpatient oncology care setting (AUS) and feasibility criteria were not met. Sufficient recruitment took place in the home care setting with advanced cancer patients in HK. Patients, family members and health professionals found the intervention helpful and acceptable, and patients and families indicated they would take part in the future in a similar study. Energy and protein intake improved from baseline to end of intervention (mean 22 kcal/kg/day to 26 and 0.9 g/kg/day to 1.0 respectively). CONCLUSION: The new intervention is feasible in a home setting when delivered to patients with advanced cancer, acceptable to patients and families, and has the potential to improve nutritional status in patients. A large randomised trial is warranted in the future.

The Nature and Types of Community Palliative and end-of-Life Care Services: A Content Analysis of Service Provider Websites in Hong Kong.

OBJECTIVE: To analyze the nature and types of community palliative and end-of-life care (PEoLC) services in Hong Kong in order to inform future service development. METHODS: This cross-sectional descriptive study systematically searched the eligible websites of service providers concerning community PEoLC services for patients and their family caregivers using the Hong Kong version of the Google Search engine in August 2021. Search terms included different traditional Chinese translations of palliative care, end-of- lifecare, and hospice care. For the included websites, information regarding the characteristics and types of PEoLC services were extracted and coded using content analysis. RESULTS: Sixteen websites providing community PEoLC services were included in this analysis, which were almost all provided by non-governmental organizations (NGOs). Around half of the service providers targeted the geriatric group and served the population in some major geographic areas and districts only. Ten types of services were identified, including (1) information and advice; (2) psychological support; (3) dying and bereavement care; (4) spiritual support; (5) medical and nursing care; (6) leisure and social well-being activities; (7) support with household and other practical tasks; (8) referral resources; (9) financial support; and (10) caregiving skills training. CONCLUSION: Existing community PEoLC services in Hong Kong are provided mainly by NGOs, with a focus on comprehensive care for patients in some areas and districts but few support services for caregivers. There is a need for continued efforts to optimize the PEoLC services to support patients and caregivers locally.

End-user perceptions of a patient- and family-centred intervention to improve nutrition intake among oncology patients: a descriptive qualitative analysis.

BACKGROUND: People with cancer are at high risk of malnutrition. Nutrition education is an effective strategy to improve patient outcomes, however, little is known regarding the impact of family and/or carer involvement in nutrition education and requires investigation. The purpose of the study was to evaluate PIcNIC (Partnering with families to promote nutrition in cancer care) intervention acceptability from the perspective of patients, families and health care providers. METHODS: A descriptive qualitative study was undertaken at an inpatient and an outpatient hospital setting in Australia and an outpatient/home setting in Hong Kong. A patient-and-family centred intervention including nutrition education, goals setting/nutrition plans, and food diaries, was delivered to patients and/or families in the inpatient, outpatient or home setting. Semi-structured interviews were used to explore perceptions of the intervention. 64 participants were interviewed; 20 patients, 15 family members, and 29 health care professionals. Data were analysed using deductive and inductive content analysis. RESULTS: Two categories were identified; 1) 'context and intervention acceptability'; and 2) 'benefits of patient- and family-centred nutrition care'. Within each category redundant concepts were identified. For category 1 the redundant concepts were: the intervention works in outpatient settings, the food diary is easy but needs to be tailored, the information booklet is a good resource, and the intervention should be delivered by a dietitian, but could be delivered by a nurse. The redundant concepts for category 2 were: a personalised nutrition plan is required, patient and family involvement in the intervention is valued and the intervention has benefits for patients and families. Converging and diverging perceptions across participant groups and settings were identified. CONCLUSIONS: In this paper we have described an acceptable patient- and family-centred nutrition intervention, which may be effective in increasing patient and family engagement in nutrition care and may result in improved nutrition intakes. Our study highlights important contextual considerations for nutrition education; the outpatient and home setting are optimal for engaging patients and families in learning opportunities.

Effects of a nurse-led post-discharge advance care planning programme for community-dwelling patients nearing the end of life and their family members: A randomised controlled trial.

BACKGROUND: Although evidence increasingly demonstrates the effects of advance care planning, the relevant studies are of questionable quality, and lack consensus regarding when and with whom to initiate the conversation. OBJECTIVE: To examine the effects of a structured, nurse-led post-discharge advance care planning programme on congruence between the end-of-life care preferences of the patient and family members, decisional conflicts and the documentation of care preferences. DESIGN: A two-arm parallel-group randomised controlled trial. PARTICIPANTS: A total of 230 dyads comprising community-dwelling patients screened by the Gold Standards Framework Prognostic Indicator Guidance and their designated family members. METHODS: Patients in the experimental group participated in a structured advance care planning programme administered by a trained nurse during three weekly home visits following hospital discharge. In contrast, the post-discharge home visits provided to the control group focused on self-care management as attention control. The study outcomes were the dyadic congruence regarding end-of-life care preferences, the patients' level of decisional conflict regarding end-of-life decision-making and the documentation of these preferences at baseline and 1 and 6 months after enrolment. Generalised estimating equation models were used to compare changes in the outcomes between the groups across time. RESULTS: At baseline, few participants had ever heard of advance directives (12/460, 2.6%) and few patients had ever discussed end-of-life issues with family members (34/230, 14.8%). After six months, the experimental group exhibited a greater increase in dyadic congruence regarding various end-of-life care preferences than the control group (Ps < 0.04). The experimental group also exhibited a greater improvement in decisional conflict at 6 months relative to the control group (P = 0.003). However, the groups did not differ significantly in terms of changes in any outcomes after one month. The experimental group had significantly higher rates of completion of advance directives and electronic medical record documentation of do-not-attempt cardiopulmonary resuscitation orders than the control group. CONCLUSIONS: This study showed that a nurse-led structured advance care planning programme could effectively improve dyadic congruence regarding end-of-life care preferences, reduce patients' decisional conflict and increase the documentation of care preferences. The findings underscored the importance of supporting nurses to introduce advance care planning at an earlier time that enable patients with sufficient time to contemplate end-of-life issues, empower patients to deliberate their choices and engage patients and their family members in open discussion.