Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers

BACKGROUND: We set out to explore whether patients with life-threatening illnesses and their informal carers consider they experience significant spiritual needs, in the context of their overall needs, how spiritual concerns might vary by illness group and over the course of the illness, and how patients and their carers think they might be supported in addressing spiritual issues. METHODS: Three-monthly qualitative interviews for up to one year with 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal carers. RESULTS: We conducted 149 in-depth interviews. Spiritual concerns were important for many patients in both groups, both early and later in the illness progression. Whether or not patients and carers held religious beliefs, they expressed needs for love, meaning, purpose and sometimes transcendence. The different experiences of lung cancer and heart failure raised contrasting patterns of spiritual issues and needs. Carers voiced their own spiritual needs. Patients and carers were generally reluctant to raise spiritual issues, but many, in the context of a developing relationship with the researcher, were able to talk about such needs. CONCLUSIONS: Spiritual issues were significant for many patients in their last year of life and their carers. Many health professionals lack the necessary time and skills to uncover and address such issues. Creating the opportunity for patients and carers to discuss spiritual issues, if they wish, requires highly developed communication skills and adequate time.     

Social class and access to specialist palliative care services

OBJECTIVE: To determine any social class differences in place of death of cancer patients in South Bristol; to explore the experience of carers; and to identify inequalities in access to palliative care. DESIGN: Two-part study: (1) A cross-sectional survey of all 960 cancer deaths in South Bristol between September 1999 and December 2002. (2) A qualitative in-depth interview study of 18 carers of patients who died of cancer during the same period in South Bristol. Fourteen of those who died were from social class IIIM (manual), IV and V (i.e. lower social classes). MAIN OUTCOMES: Place of death of patients according to social class and geographical distance from the hospice. Carers' accounts of the way in which illness and death were conducted, and their response to the management of death and dying. RESULTS: The cross sectional survey showed that patients from social class V were less likely to die in the hospice. This finding was independent of geographical proximity. In the qualitative study, no class specific beliefs about death and dying were identified. Attitudes to the way dying should be conducted were common across the classes. Families expected to be present and centre stage at the time of death and for it to be conducted in a dignified and personal manner. Health care staff in all settings supported them in this aim. No one in this study died without a family member present. Some elderly carers were less open than younger carers in the way they talked about death and did not wish to be present at the death. Some carers from social class IV and V were less active in seeking information or asking for hospice admission than carers from other classes. Unrealistic expectations about the availability of hospice beds were common to all carers. Anxiety was common among carers. It was reduced by the provision of reliable and consistent healthcare support, by information provided in a timely and sensitive way, and by open and shared decision making between carer and patient. Most important in reducing anxiety was the support of a second carer who lived locally and was reliable. Carers from social classes IIIM (manual), IV and V were more likely to have this kind of support than carers from social classes I, II and IIIN (non-manual). CONCLUSION: Although cancer patients from social class V were less likely than others to die in the hospice, social inequality in access to or utilisation of healthcare in terminal illness was not prominent in carers' accounts. When it did arise, it was associated with passivity in seeking information and support on the part of some carers from social classes IV and V. Carers from social classes IIIM-V received more regular and reliable support from their families than those from social classes I-IIIN.     

Lung cancer health care needs assessment: patients' and informal carers' responses to a national mail questionnaire survey.

The objective of this study was to describe patients' and informal carers' perceptions of care received and services offered following a diagnosis of primary lung cancer. We prepared a prospective, national, mail questionnaire survey of 466 patients with a diagnosis of primary lung cancer and a lay carer of their choice. The setting was 24 randomly chosen hospitals throughout the UK, from a range of urban (n = 11) and rural settings (n = 13). The majority (76%/159) of responders were recipients of care from cancer units. Two hundred and nine patients (45%) with primary lung cancer and 70 (15%) lay carers completed questionnaires. The main results that we found were that key areas of unmet need were most apparent during periods away from acute service sectors, with as few as 40% of patients reporting having received as much help as they needed from community services. The greatest onus of care for patients fell to lay carers, but only 29% of patients identified their lay carers as having needs in relation to their illness. Where patients received all their diagnostic tests in one hospital they were significantly more likely to wait less time between first seeing their general practitioner (GP) and being told their diagnosis (P = 0.0001) than patients who had to attend more than one hospital during their diagnostic work-up period. Fifty per cent of patients reported experiencing some degree of breathlessness even at rest, but only 15% reported having received any advice on living with it. Less than a quarter (23%) of hospital consultants identified anxiety as a key problem for patients with lung cancer, but 66% of patients identified it as such. Hospital staff largely overlook the needs of informal carers, who derive support from a small, mainly community oriented group of professionals, but accessing help is problematic and is dependent on local resources and a need to be proactive. Our conclusions are that developments in service provision for patients with lung cancer and their informal carers need to focus on six key areas: development of strategies to encourage patients to present earlier to their GP; ongoing evaluation of rapid diagnostic clinics; development and evaluation of a lung cancer care coordinator role; evaluation of innovations in delivery of nursing care in the community; development of local guidelines to facilitate equitable access to palliative care and social services; and evaluation of supportive strategies targeted at lay carers.     

Information Centre: responding to needs of older people and carers

This article is the fourth in the series focusing on recent developments in the Elderly West Research Centre in western Sweden. It describes an innovative research, development and evaluation project, the Aldre Vast Information Centre (AV IC), which was developed in direct response to the local needs of Swedish older people and their family carers who participated in the EU ACTION project (Assisting Carers using Telematics Interventions to meet Older persons' Needs) outlined in the first article in this series (Vol 11(11): 759-763). Families requested easier access to information, education and support from professional carers. They also valued the informal support network from other family carers who listened and shared experiences together. In response to these needs, the AV IC project was established to provide telephone, videophone and internet support to older citizens and their families living in the Sjuharad area of west Sweden. The Information Centre is run by professionals and volunteers with the aim of empowering and supporting older people and their families to make informed choices and decisions regarding health and social care matters of importance to them. The project provides an innovative example of how the Aldre Vast Sjuharad user-focused philosophy (Magnusson et al, 2001) can be applied in practice to provide an appropriate evaluation model - namely, one that enables all those stakeholders in the IC to have a voice in its shape and direction.     

Identifying the needs of carers in mental health services

AIM: To assess all carers in the Gloucester Assertive Community Treatment Team and identify their needs. METHOD: Carers were identified using the definition employed in the Notional Service Framework for Mental Health (DH, 1999): they were family or close friends who spent a minimum of 12 hours per week helping/supporting the service user. Paid carers were excluded. A standardised carer's assessment that had been developed as part of the care programme approach (CPA) was used to evaluate the needs of carers. RESULTS: The study highlights the type of support that carers give those who use the mental health services and reveals the impact that this caring has on them. The carers' needs are identified as: someone to talk to; help with cleaning/ironing; help with finances; support to enable them to take a break; plus respite care and accommodation for the service user. CONCLUSION: Carers play an important role in supporting people who are diagnosed with severe mental illness although further research is necessary to consider the benefits of a closer relationship between the carer, service user and mental health professionals.     

Complementary and psychological therapies in a rural hospital setting

The National Institute for Clinical Excellence (NICE) (2004) in the UK has led the way in recognising the need for a holistic approach to the support and care of people with cancer, with the publication of Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. This article describes a three-year project, funded by the Big Lottery Fund through Macmillan Cancer Support. The project is being implemented by an art therapist, clinical psychologist, complementary therapist and administrator together with the existing team of three Macmillan nurses, an art therapist and two Macmillan occupational therapists. The project aims to provide a service to patients, carers and to the health professionals who work with people with cancer and their families. The service is located in a rural and Welsh-speaking area; as such, accessibility of the service and language choice play an important role in the delivery of support and treatments.     

A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff

OBJECTIVES: To explore the experiences of people involved in UK palliative care day services (PCDS) and identify the important outcomes of this service. METHODS: Focus groups were carried out separately with patients, informal carers and volunteers from four purposively selected palliative care day units and with day unit managers from 11 units. RESULTS: Patients benefited from both the support of PCDS professionals and social support of fellow PCDS patients, which contributed to a perceived improvement in their quality of life. Carers appreciated both the respite and support from PCDS, but acknowledged that they still had a poor quality of life. The challenges facing PCDS include the difficulties of discharging patients and the future role of volunteers. DISCUSSION: PCDS improved patients' perceived quality of life and future evaluations on patient outcomes could use concepts such as self-esteem, self-worth and confidence. Future service provision could explore the possibility of a mixed service using both the traditional and appointment-based system.     

Patients and carer experiences of care provision after a diagnosis of lung cancer in Scotland

Introduction This qualitative study was set out to explore experiences of care provision of 60 patients diagnosed with lung cancer and a carer of their choice Materials and methods Participants were invited to take part in three in-depth interviews over a 6-month period. After considerable sample attrition due to worsening disease or death over the study period, 23 complete patient data sets were available for analysis. Fifteen complete carer data sets were analysed. Results Four key domains of need were identified: (1) the pathway to confirmation of diagnosis, (2) communication of diagnosis, treatment options and prognosis, (3) provision of co-ordinated, family-oriented care and (4) support away from acute services. Discernable shifts in patients’ needs were apparent over time within and across the four domains, illustrating a complex relationship between the categories of need experienced by patients and carers. Discussion Around the time of diagnosis, the priorities of patients and carers centred around their needs for information about the process of treatment and the options open to them. As time went on, they appeared to experience feelings of greater isolation and physical dependency and were particularly aware of deficiencies in the coordination of supportive care. Many patients appeared to rely on the relationship they had developed with their hospital consultant and, therefore, found it difficult to make the transition into palliative care or at least a more primary-care-led service once treatment was over. Conclusion Data from the study point to the importance of heightening general practitioner awareness of potential signs and symptoms of lung cancer. Findings indicate the need to evaluate the benefits to patients and carers of rapid access to diagnostic tests and results and support the establishment of effective and streamlined supportive care pathways for patients with lung cancer.     

Information needs of the informal carers of women treated for breast cancer.

Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.     

Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring

Purpose. To examine the support required by family carers for stroke survivors.

Methods. Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU).

Results. Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services.

Conclusions. Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.     

Burden of care in amyotrophic lateral sclerosis

OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers. PATIENTS AND METHODS: The total burden of care and burden components in 37 ALS carers were measured using validated questionnaires. Furthermore, influencing factors (functional impairment of the patient, additional carers, participation in support groups) were assessed. RESULTS: The mean total burden of care for ALS was low compared with dementia, mixed neuropsychiatric and internal diseases, but was correlated with functional impairment (P = 0.003). The main burden components were 'personal and social restrictions' and 'physical and emotional problems'. Problem behaviour of the patients was low in general, but was higher in carers participating in support groups (P = 0.002). Carers supported by additional carers had higher strain. CONCLUSION: The low burden of ALS carers may be caused by the low incidence of problem behaviour in ALS patients. However, if problem behaviour exists, carers participate more often in support groups, indicating the need for assistance. The burden of care increases with the functional impairment. Support for the carers has to start sooner.     

Exploring the emotional support needs and coping strategies of family carers

This paper explores the emotional support needs and coping strategies of family carers derived from two focus group interviews, each group comprising seven family carers. The interviews were carried out in Northern Ireland as part of phase one of the ACTION (Assisting Carers using Telematics Interventions to meet Older persons Needs) project. The purpose of the interviews was to investigate family carers' needs and experiences, but this paper focuses specifically on the emotional support needs and coping strategies identified by group members. The issues discussed included information and social support needs, the emotional impact of caring, and coping with and adaptation to the caring role. The findings reveal that for the majority of family carers their experience was one of constant searching for support and information. The anxiety and frustration associated with inconsistent and irregular support and lack of information was a major source of concern for the carers in the study. However, the carers employed a number of positive and negative coping strategies to deal with the stress associated with their caregiving role. The study concluded with the recommendation for nurses and other health care professionals to become more proactive in assessing and meeting carers' emotional support needs.     

An evaluation of dependency assessment: experiences of staff, patients and carers in a UK hospice

AIM: To evaluate the experiences of health-care professionals, service users and carers of service users from a UK hospice in relation to dependency assessment. DESIGN: Qualitative evaluation. SAMPLE: Purposive, convenience sample of hospice staff, patients receiving hospice services and carers of patients receiving hospice services. METHODS: Focus group interviews with hospice staff and carers of hospice service users. Individual interviews with patients. RESULTS: Staff felt the tool used produced inaccurate results, in part because of omissions in content. They did not perceive the data produced affected working practice, e.g. staffing levels. Patients described unobtrusive assessment and stated their needs were met. Carers reported feelings of isolation. They also described differing information and support needs from the patients. CONCLUSION: Further research is required to improve the validity of dependency data collection. Further investigation of carer assessment is also justified.     

Finding the right kind of support: A study of carers of those with a primary malignant brain tumour

PurposeCaring for someone with a primary malignant brain tumour is very demanding due to the dynamic situation involving changes to personality, short term memory loss and changes in family relationships. The purpose of this qualitative study is to examine the support needs of carers of those with a primary malignant brain tumour.Methods & sample22 Carers who were currently caring for someone with a primary malignant brain tumour were recruited from one specialist cancer centre in the south east of England. The study took a grounded theory approach and data were analysed using the constant comparative method generating categories and themes that are grounded in the data.Key resultsA key concept that emerged from the data was: ‘Connecting on the caring journey’. The themes that emerged from the key concept were: building helpful relationships; safe places and comfort zones; and threats to connecting.ConclusionsMany carers do find a great deal of support within the family and from their relationships with friends as well as from cancer and carer support groups. However this is by no means universal and many carers experience a lack of timely access to good quality supportive care services. For some carers supportive care services do not meet their expectations so they spend valuable time searching for the connections they need to continue to care combined with feeling frustrated and under pressure.