Addressing the needs of caregivers of cancer patients in general practice: a complex intervention (original) (raw)
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Health & social care in the community, 2015
The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting. Convenience samples of 11 carers and 5 GPs were interviewed between September 2010 and December 2011 regarding their experiences with and perceptions of the NAT-C. Open-ended questions were used, and the transcripts were analysed qualitatively to identify themes and patterns. Three major themes were identified: (a) Acceptability of the intervention; (b) Impact of the intervention on the GP-patient relationship; and (c) Place of the intervention in ...
British Journal of General Practice, 2013
IntroductIon Individuals suffering from life-limiting illnesses have clearly recognisable needs, and these are the primary focus of the efforts of health professionals, close family and friends. Their primary carers have lower quality of life (QOL)-impairment in physical functioning, general health, and vitality, and worse overall physical health than carers of patients receiving curative or active treatment. As patients deteriorate physically, carer QOL worsens. 1,2 Further, while many carers feel positively about this role, caregiving may also elicit significant emotional reactions and may increase the risk of psychiatric morbidity and complicated grief. 3 They may also suffer reduced social contact and face significant financial burdens. 3 Carers whose needs are met are more likely to provide adequate support to enable patients to remain at home as close to death as possible. 4 GPs usually have important contextual knowledge of the family and of the patient's illness. However, patient needs are the primary focus of the carer and health professionals, and carer needs and distress may be overlooked. 5 The GP role in multidisciplinary cancer care is not well defined, and in practice it varies widely according to the interplay of factors including patients' expectations and GPs' motivation. 6 General practice consultations provide an opportunity to address carers' legitimate needs as patients in their own right, if both parties are willing, 7 and may provide a formal role for GPs in the multidisciplinary cancer team. A randomised controlled trial (RCT) was conducted to assess the hypothesis that the efficacy of a GP-based intervention incorporating a carer-reported needs checklist and a supporting GP Toolkit of resources, reduces the reported number and intensity of unmet carer needs, compared with usual care. Method This trial was conducted in Brisbane, Australia. GPs act as gatekeepers to the health system, and 90% of all Australians see a GP at least once a year. 8 Cancer treatment services are usually conducted by multidisciplinary teams comprising oncologists, radiologists, surgeons and a range of nursing and allied health staff. A detailed description of the trial design is presented elsewhere. 9 Carers were recruited through three oncology services and one palliative care service between April 2009 and March 2011. Participants were adult (≥18 years) carers of patients with locally invasive or metastatic disease, who were capable of providing informed consent. They were
BMC Family Practice, 2011
Background: It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers' needs as patients are often marginalised by health professionals, including General Practitioners (GPs), who may miss the breadth of caregivers' needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers' own health concerns.
PURPOSE: To examine (1) approaches used by oncologists to administer the palliative care needs assessment tool (PC-NAT) in consultations with patients with advanced cancer and their caregivers, (2) potential of this tool to facilitate discussion of psychosocial issues, and (3) whether use of the tool alters the length of consultations. DESIGN: A qualitative analysis was undertaken of audio-taped, outpatient consultations. SAMPLE AND METHODS: 20 individuals with advanced cancer and their caregivers who participated in an interrupted time series study of the impact of the systematic utilization of the PC-NAT had a total of 48 consultations audio-taped. These included 13 baseline recordings where PC-NAT was not completed and 35 that included completion of the PC-NAT. Audio-tapes were coded and SPSS was used to calculate the impact of using the PC-NAT on consultation length. FINDINGS: This study revealed that the administration of the PC-NAT was not optimal to identify and discuss psychosocial concerns. The PC-NAT was delivered without an explanation of the function of the assessment and in jargonistic terms, and tended not to be integrated into the consultation. The majority of the interactions' content related to physical health issues. The range of empathic responses given by the oncologist in regards to patient and caregiver concerns ranged from low (denial/disconfirmation) to very high (confirmation), though codes "dismissing" or "denying" were mainly assigned to psychosocial concerns compared to medical ones. There was no significant increase in consultation time when the routine needs assessment was included. Conclusion and interpretation: Staff training to enhance understanding and facilitate the timely use of the PC-NAT is warranted as well as to enhance response to unmet needs as part of routine care needs assessment tool.
Psycho-Oncology, 2011
Objective: To assess the impact of the systematic use of the Palliative Care Needs Assessment Guidelines and Needs Assessment Tool: Progressive Disease-Cancer (NAT: PD-C) on clinical assessment, response and service utilisation. Study setting: Three major oncology treatment centres in NSW, Australia. Study design: Between March 2007 and December 2009, 219 people with advanced cancer were recruited to complete bimonthly telephone interviews. The intervention, introduced after at least two baseline interviews, involved training health professionals to complete the NAT: PD-C with patients approximately monthly. Data collection: Rates of service use and referrals were compared pre-and post-introduction of the NAT: PD-C. Rates of completion of the tool; its impact on consultation length; and the types of needs and follow-up care to address these were also assessed. Principal findings: The NAT: PD-C had a high rate of completion; identified needs consistent with those self-reported by patients in interviews; and did not alter consultation length. No changes in the number of health professionals seen by patients were found pre-and postintervention. Conclusion: The NAT: PD-C is an efficient and acceptable strategy for supporting needsbased cancer care that can potentially be incorporated into standard routine care without increasing the burden on care providers.
The universal, situational, and personal needs of cancer patients and their main carers
European Journal of Oncology Nursing, 2003
The importance of psychosocial factors in the cancer journey for both patients and their carers has been recognised in UK health policy. The aim of this paper is to consider--(1) which needs are regarded as important by patients and their carers; (2) which are the unmet needs of patients and their carers. The study focuses on the responses of 233 paired cancer patients and their carers derived from a cross-sectional questionnaire survey in three health authorities in North West England. The majority of patient--carer pairs expressed the importance of having good relationships with health-care professionals and receiving good-quality information. These can be identified as 'universal'needs. A minority of patient--carer pairs expressed the importance of other kinds of needs.These items were mainly to do with managing daily life, emotions, and social identity and can be identified as 'situational'or 'personal' needs. Where there were discrepancies between patients and carers, patients were likely to identify more needs as important. In contrast, carers have more unmet needs, reflecting their comparative neglect. Broadly, 'universal' needs are being met, but 'situational' and 'personal' needs, particularly among carers, are relatively unmet and require greater attention on the part of nurses and primary care professionals. r
PLOS ONE, 2021
Background People with cancer often have unidentified symptoms and social care needs. The Needs Assessment Tool-Cancer (NAT-C) is a validated, structured method of assessing patient/carer concerns and prompting action, to address unmet need. Aims Assess feasibility and acceptability of a definitive two-armed cluster randomised trial of NAT-C in primary care by evaluating: recruitment of GP practices, patients and carers; most effective approach of ensuring NAT-C appointments, acceptability of study measures and follow-up. Methods Non-blinded, feasibility study in four General Practices, with cluster randomisation to method of NAT-C appointment delivery, and process evaluation. Adults with active cancer were invited to participate with or without carer. Practices cluster randomised (1:1) to Arm I: promotion and use of NAT-C with a NAT-C trained clinician or Arm II: clinician of choice irrespective of training status. Participants completed study questionnaires at: baseline, 1, 3 and ...
Acta bio-medica : Atenei Parmensis, 2014
BACKGROUND AND AIM The literature on cancer patients agrees that most of the cancer patients' needs often remain unmet. How are these different needs perceived by patients, relatives and professionals? The present research has tried to make a contribution by analysing evidences of the needs, especially unmet, that different actors attribute to a cancer patient. METHOD A total of 42 Italian participants (76.2% women) took part in the study. Patients, relatives, physicians, nurses, social care assistants and volunteers participated separately in six focus groups. Three face-to-face interviews were conducted with psychologist, general practitioner and social worker. All focus groups/interviews were processed through an analysis of thematic content. RESULTS The results showed a priority given to the need for information, and also the importance of psychological and social support needs, confirming that they remain unmet. Differences between participants are visible by looking at the...