Lo bello

in cancer patients at end of life (research data available to the team)

The Phase I systematic review and Phase II patient and carer interviews

Beliefs

l Evidence of beliefs that initially hindered, reduced or delayed pain control. ¢ Fears of addiction/dependency (not being able to come off it if started). ¢ Fears of having to rely on morphine.

l Patients self-managing to avoid‘crises’(i.e. pre-empting emergencies and seeking to avoid hospital admissions).

l Fear of side effects (e.g. reluctance to increase baseline pain medicines for fear of drowsiness); therefore, use of pro re nata medication instead.

l Concern about out-of-hours care and treatment.

l Common wish to take the minimum medication possible–often underpinned by rationale‘so that they can have more later’.

Skills

l Carer often acts as the person who reminds the patient to take medicines, helping when patients become confused or forgetful, ensuring that medicines taken at appropriate times.

l Development of routines to suit home life (e.g. to prepare medicines in evening for next day or week). Recurrent contextual issues

l Lack of in-depth conversations with patient and carer regarding pain medications across control group. l Problems with 111 service in a crisis.

Value of intervention

l Most found some aspects of it helpful.

l Carers commented on the value of CCMM resources in the toolkit, particularly for information, reassurance and supporting problem-solving.

l Some positive changes in medicines management (e.g. increased acceptance of the need for opiates), knowledge being reinforced or enhanced, and behavioural change (e.g. responding more readily to patients’requests for pain relief and improved systems in place for giving and recording medicines). Nurse data

l Only some aspects of the intervention were perceived as distinct from current practice. l The toolkit (e.g. the information about opioids was seen as a new and useful resource). l The structured conversational process was considered to be similar to nurses’routine practice.

l Value of having written materials about opioids and introducing more systematic techniques for managing pain medication.

l Positive experiences of training helped nurse engagement.

l Nurses’accounts emphasised the diversity of patient and carer circumstances, experiences and needs. The adaptability of the intervention, the extent to which nurses could individualise its delivery was perceived as crucial to its usefulness.

l Nurses did not fully exploit the adaptability of the toolkit. Although some nurses introduced the toolkit resources selectively, there was a tendency to use the toolkit as a package that they gave to carers in its entirety with the expectation that they would decide for themselves which tools would be useful. l The focus on pain was seen by some nurses as limiting its usefulness. They argued that carers typically

managed multiple medications for a range of symptoms at end of life so broadening the intervention to accommodate that would increase its applicability and acceptability to carers. Nurses were critical of some written resources, which they felt should be comprehensive (all medicines for cancer) rather than pain specific (e.g. the medicines chart).

l Most argued that introducing the intervention earlier in the course of a patient’s illness would be easier, more appropriate and of greater benefit. They gave examples of carers who were unable to engage with the intervention because they were overwhelmed and distressed.

l The nurses reported that the intervention had facilitated communication and relationship building. l Most found value in the intervention and identified advantages in offering carers written information

about analgesics and simple formats for documenting pain and medication. Some thought the intervention had influenced their practice: they would be more likely in future to include carers in discussions and encourage them to keep records.

Carer need literature

Lauet al.93

l Interviews with informal caregivers (n=23) and hospice providers (n=22).

l Caregivers’life experience and self-confidence facilitated medication management.

l Caregivers’negative emotional states, cognitive and physical impairments, low literacy, other competing responsibilities, as well as patients’negative emotional states and complex medication needs were limiting factors.

Kimberlinet al.94

l Focus groups and interviews with cancer patients (n=22) and family caregivers (n=16).

l Seven themes emerged suggesting improvements that are needed in the communication process.

These included (1) improving the process of information exchange, (2) increasing active participation of patient and caregiver in the care process, (3) improving provider relationship-building skills, (4) overcoming time barriers, (5) addressing fears regarding use of pain management medications, (6) fostering appropriate involvement of family and caregivers in the communication process and (7) improving co-ordination of care among providers.

Mehtaet al.95

l Grounded theory study of family caregivers (n=24).

l Derived an explanatory model of how family caregivers manage the pain of cancer patients at home involving four main processes:‘drawing on past experiences’;‘strategizing a game plan’(accepting responsibility for pain management, establishing relationships with patients and health-care team and seeking information on pain and pain management);‘striving to respond to pain’(including implementing strategies for pain relief, determining the characteristics of pain and verifying the degree to which pain relief strategies are successful); and‘gauging the best fit’(a decision-making process that

Mehta_{et al.}96

l Grounded theory study of family caregivers (n=24).

l Family caregivers are not always well prepared and require appropriate support to ensure optimal pain control.

l Understanding that family caregivers are continuously engaged in specific processes as they prepare for and implement pain management strategies can help HCPs tailor their interventions.

Mehta_{et al.}97

l Grounded theory study of family caregivers (n=24).

l Caregivers assessed different types of pain and, therefore, were experimenting with different types of interventions. Not all family caregivers were able to distinguish between the different pains afflicting patients and, consequently, were not selecting the most appropriate interventions. This often led to poorly managed pain and frustrated family caregivers.

Schumacher_{et al.}98

l Transcribed interactions between intervention nurses and patients (n=52) and their family

caregivers (n=33).

l Describes the difficulties with pain management that patients and family caregivers bring to a nurse’s attention during a teaching and coaching intervention. Found patients had difficulty in seven areas when they attempted to put a pain management regimen into practice, namely (1) obtaining the prescribed medication(s), (2) accessing information, (3) tailoring prescribed regimens to meet individual needs, (4) managing side effects, (5) cognitively processing information, (6) managing new or unusual pain and (7) managing multiple symptoms simultaneously. The findings suggest that the provision of information about cancer pain management to patients and their family caregivers is not sufficient to improve pain control in the home care setting.

Appendix 4

Summary of learning IMPACCT

M

intervention for advanced cancer pain using Michieet al.’s39_{behaviour change wheel as theoretical}

underpinning.