14 Enabling tailored and coordinated support for family carers of people with motor neurone disease through adaptation of a carer support needs assessment tool (CSNAT) intervention

2018 ◽  
Vol 8 (3) ◽  
pp. 365.1-365 ◽  
Author(s):  
Gail Ewing ◽  
Sarah Croke ◽  
Christine Rowland ◽  
Gunn Grande
Keyword(s):  
Needs Assessment ◽  
Assessment Tool ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Support Needs ◽  
List Type ◽  
Family Carers ◽  
Carer Support ◽  
Main Support ◽  
Stage 1

IntroductionFamily carers provide vital support for people with Motor Neurone Disease (MND) but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this.AimTo adapt an existing carer support needs assessment tool (CSNAT) intervention to support the needs and situation of family carers of people with MND.MethodsStages:Focus groups and interviews with 33 carers (14 bereaved 19 current carers) to capture support needs key points of change during patient’s illness and main support services.Workshops with HCPs (N=17 recruited to date) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support.ResultsStage 1: Carers’ experience was one of dealing with a devastating diagnosis a constantly changing situation with heavy dependence on them as carers and with little consideration of their separate support needs. Carers’ support needs mainly mapped onto CSNAT domains but MND carers may experience relationship issues warranting further consideration. Stage 2 will integrate HCP and carers’ views on when where how and by whom MND carer assessment and support should best be provided.ConclusionsFindings to be presented from Stages 1 and 2 will provide insights into how MND carers want to be assessed and supported. This will form the basis for an intervention to be tested in a future Stage 3 feasibility study.FunderMarie Curie Research Fund/Motor Neurone Disease Association

scholarly journals Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

2016 ◽  
Vol 15 (1) ◽  
pp. 32-43 ◽  
Author(s):  
Samar M. Aoun ◽  
Kathleen Deas ◽  
Linda J. Kristjanson ◽  
David W. Kissane
Keyword(s):  
Needs Assessment ◽  
Family Caregivers ◽  
Assessment Tool ◽  
Service Providers ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Assessment Process ◽  
Support Needs ◽  
The Family ◽  
Carer Support

AbstractObjective:Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers.Method:The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire.Results:A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family.Significance of Results:The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

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

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Hui-Lin Cheng ◽  
Doris Yin Ping Leung ◽  
Po Shan Ko ◽  
Ming Wai Chung ◽  
Wai Man Lam ◽  
...  
Keyword(s):  
Palliative Care ◽  
Needs Assessment ◽  
Caregiver Burden ◽  
Assessment Tool ◽  
Chinese Version ◽  
Support Needs ◽  
Family Carers ◽  
Carer Support ◽  
Care Practices ◽  
Test Retest Reliability

Abstract 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.

scholarly journals Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (12) ◽  
pp. e039031
Author(s):  
Gail Ewing ◽  
Sarah Croke ◽  
Christine Rowland ◽  
Gunn Grande
Keyword(s):  
Needs Assessment ◽  
Assessment Tool ◽  
Well Being ◽  
Support Needs ◽  
Routine Practice ◽  
Wide Range ◽  
Carer Support ◽  
Qualitative Focus Groups ◽  
Supportive Interventions ◽  
Stage 1

ObjectivesMotor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing.DesignQualitative: focus groups, interviews and carer workshops.SettingThree UK MND specialist centres serving a wide range of areas.ParticipantsStage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years.ResultsCarers described challenges of a disease that was terminal from the outset, of ‘chasing’ progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both ‘enabling’ domains which identify carers’ needs as co-workers as well as carers’ ‘direct’ needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers.ConclusionsCarers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.

scholarly journals Barriers and facilitators to implementing the Carer Support Needs Assessment Tool in a community palliative care setting

2019 ◽  
Vol 24 (6) ◽  
pp. 284-290
Author(s):  
Zoe Horseman ◽  
Libby Milton ◽  
Anne Finucane
Keyword(s):  
Palliative Care ◽  
Needs Assessment ◽  
Assessment Tool ◽  
Palliative Care Service ◽  
Barriers And Facilitators ◽  
Support Needs ◽  
Care Nurse ◽  
Increased Risk ◽  
Palliative Care Setting ◽  
Carer Support

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an ‘add-on’ to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.

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