Informal carers of older family members: how they manage and what support they receive from respite care

Aims. To describe informal carers’ coping strategies and their experiences of the support provided by respite care. Background. The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution. Design. Survey. Methods. The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index ( Nolan et al. 1995 ) and an index developed by the researchers. Results. Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship. Conclusions. The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role. Relevance to clinical practice. Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well‐being of the entire family.     

In search of legitimacy – registered nurses’ experience of providing palliative care in a municipal context

Background: The palliative care approach was originally developed for hospice care and for persons with cancer diseases, but has gradually expanded to embrace other contexts and people of all ages, with various life‐threatening diseases. The palliative care concept thus also applies to older people and the context of municipal care, where Registered Nurses (RNs) hold key care provision positions. The municipal context is not, however, focused primarily on advanced nursing care, and it is important to highlight RNs’ prerequisites for care provision. Aim: The study’s aim was to describe RNs’ experience of providing palliative care for older people in a municipal context. Data were collected through focus group discussions with 20 RNs from four different municipalities in southern Sweden and were analysed using conventional content analysis. Findings: The results showed that the nurses experienced that it was they who cushioned the effects of unclear responsibilities between different organizations, but had limited legitimacy in the municipal context and in relation to other care providers. The results also showed that nurses lacked proper support and prerequisites for providing high‐quality palliative care to older dying patients. Conclusion: The results pinpoint the importance of increased acknowledgement of nurses’ knowledge and skills and a critical view on the effects of moving towards an organization composed of different consultants, which can lead to even more unclear responsibility for nursing care provision.     

Mental health nurses' perspectives of people who self‐harm

Self‐harm is a significant health issue, a leading cause of serious injury and is an indicator of psychological distress. Nurses play an important role in providing therapeutic care to people who self‐harm. The aim of this study was to explore mental health nurses’ (MHNs) experience of working with people who self‐harm. Data were collected using semi‐structured interviews and transcribed verbatim from 14 MHNs across Australia. Elo and Kyngäs’ inductive content analysis was used to extract meaning from the data which is reported in accordance with the consolidated criteria for qualitative research guidelines (COREQ). Two categories were identified which captured the MHNs’ experiences of working with people who self‐harm: (i) Nurses’ level of preparedness to work with people who self‐harm; and (ii) The healthcare system. Several sub‐categories were identified. Attitudes, knowledge, skills, and support from others influenced their experience of working with people who self‐harm. Clinical and life experience, undergraduate programme preparation and ongoing education all contributed towards developing therapeutic care with this group of patients. Nurses are vital in the care of people who self‐harm and an accurate understanding of the functions of self‐harm focuses therapeutic interactions to manage psychological distress and reduce further self‐harm and lessen the risk of suicide.     

Being there: parenting the child with acute lymphoblastic leukaemia

Aims and objectives. To gain insight into the lived experience of parenting a child with leukaemia during treatment. Background. Diagnosis of leukaemia in children leads to an existential shock for parents and a reversal of normal family life. Today, in the Netherlands, after diagnosis, children stay at home most of the time. Therefore, their parents face considerable responsibilities for administering home‐based treatment and for the support of their child during illness and treatment. Methods. A grounded theory study was undertaken at a Dutch University Hospital and involved one‐time individual in‐depth interviews with 12 mothers and 11 fathers (n = 23) of 12 children. Findings. ‘Being there’, was identified as the core concept. It means: ‘I’ll be there for you; I will never let you down’. ‘Being there’ is described as a parental response to the perceived vulnerability of the child and the parental need to give meaning to parenthood. It serves two purposes: protection and preservation. Protection means guarding the child against the negative aspects of illness and treatment. Preservation refers to the way parents influence the child’s perception of his/her life, thus contributing to his/her coping and willingness to undergo treatment, to maximise the chances for survival. Six aspects were identified: a trusting relationship, presence, emotional support, advocacy, routines and rituals and effacing oneself. Conclusions. The concept provides a theoretical frame for parenting the child with cancer. It clarifies the actions and reactions of parents and increases insight into the underlying force that enables parents to provide continuing care despite their personal burden. Relevance to clinical practice. The concept offers an essential insight into parenting the child with acute lymphoblastic leukaemia and has relevance for nursing practice and education. Understanding of the concept would improve the ability to understand, communicate and work pro‐actively in partnership with parents.     

The complex nature of informal care in home-based heart failure management

Title. The complex nature of informal care in home‐based heart failure management. Aim. This paper is a report of a study to examine the complexities of informal caregiving for people with chronic heart failure. Background. Little is known of the activities involved and underlying informal care. Heart failure is a common and burdensome condition in which carers play an important management role. Method. Semi‐structured interviews were carried out with 30 informal carers nominated by patients with mild‐to‐moderate heart failure (24 spouses, four children, one sibling and one neighbour). Interviews examined knowledge of heart failure, its effects, reported management practices and concerns, decision making and support. The data were collected in 2001. Findings. The management of heart failure was a shared and ongoing responsibility between the carer and patient. Carers’ clinical knowledge of the condition and management was often limited, but they developed extensive knowledge of its personal effects on the patient. Invisible care activities included monitoring signs of symptom exacerbation and energy boundaries against perceived current and future demands and priorities. Visible care activities included medication management, dressing, bathing and help‐seeking. Carers responded to patients’ capacities, and adopted philosophies that sought to foster independence while facilitating as normal a life for the patient as was possible and safe. Conclusion.  Interventions for informal carers around effective chronic heart failure management should address both visible and invisible informal caring. Future research is needed to develop interventions with carers to improve quality of care, reduce costs and improve patient quality of life. More research is needed to explore the complexities of lay caregiving and to explore the invisible dimensions of informal care further.     

Older women nurses: health, ageing concerns and self-care strategies

Title. Older women nurses: health, ageing concerns and self‐care strategies Aim. This paper is a report of a study of the health and ageing concerns and self‐care strategies of older female Registered Nurses currently working in direct care‐giving roles in acute public hospitals and community facilities. Background. Nursing is a rapidly ageing, and female‐dominated workforce. However, despite the ageing of the nursing workforce, little is known about the needs and health concerns of older nurses. Method. A feminist perspective was used and 12 female Registered Nurses aged 40–60 years, employed in various acute hospital and community health settings in Australia took part in qualitative interviews in late 2004. Narratives were audio taped, transcribed and analysed thematically. Findings. Two major themes were identified. The first theme –Aches and pains of ageing– had four subthemes: Neglecting self: ‘You don't think of yourself first’; Physical changes: ‘The body is wearing out’; Living with pain: ‘You just work around it’; and Tiredness: ‘I’m just tired all the time’. The second theme –Evolving lifestyles: works in progress – had three subthemes: The power of exercise: ‘I feel great…and I’m enjoying life’; Healthy eating: ‘Low fat, lots of fruit and veg, little processed food’; and Adapting to ageing: ‘I think it’s quite a good time of life’. Conclusion. Further research is needed to explore the need for protective work practices and promoting healthy lifestyle practices for ageing nurses. Managers need to recognize the changing health needs of older clinical nurses and offer, for example, flexible rostering and tailored exercise programmes to promote their health.     

Exploration of Iranian intensive care nurses' experience of end‐of‐life care: a qualitative study*

Background: A challenge for intensive care nurses is providing the best possible care to patients in an end‐of‐life stage. The fact that some patients will die despite the efforts of the health care team can affect the psychological state of the nurses and families. Lack of attention to such an issue can bring about unpleasant consequences for both patients and nurses. Aim: Using a qualitative design, the aim is this article explores the experiences of intensive care nurses providing care for end‐of‐life patients. Methods: The data were collected through in‐depth interviews with a purposive sample of 10 nurses working at intensive care units (ICUs). Interviews were transcribed and finally analysed through the conventional content analysis. Findings: Two themes emerged out of the experience of providing care to the end‐of‐life patients. The findings revealed that for Iranian intensive care nurses providing care to such patients was accompanied by emotional burden and values and beliefs. Conclusion: The results of the study have increased the current knowledge over the experience of providing care to end‐of‐life patients at ICUs. It also has revealed the need for providing the nurses with psychological support, accommodating the possibility for offering a complete care, attending to and managing the conditions of the patient and their families and engaging nurses in decision making about end‐of‐life patients. Relevance to practice: Managers ought to provide specialized units for providing care to end‐of‐life patients. Nurses working on these units will require emotional support.     

The Effect of Reminiscence Group Work on Life Satisfaction,Self‐Esteem and Mood of Ageing People with Intellectual Disabilities

Background This study evaluates the effects of reminiscence group work on the subjective well‐being of ageing people with intellectual disabilities. Methods The content of the successive group work sessions was manipulated as follows: a control‐phase with three ‘current topics’ sessions, an experimental phase with six ‘reminiscence’ sessions and finally three ‘current topics’ sessions. Life satisfaction, perceived self‐competence and mood were measured by questionnaires, filled in by the participants and direct support workers. Results A quasi‐experimental pre‐test–post‐test design (n = 41) did not detect any changes in life satisfaction and perceived self‐competence. For mood, a quasi‐experimental ABA‐design (n = 41) did not yield an experimental treatment effect, but a significant increase in scores was observed over time. Personality characteristics ‘extraversion’ and ‘emotional stability’, but not memory specificity were found to be significant covariates for the mood scores. Conclusion Although the study’s design did not allow us to confirm the effect of reminiscence group work, the analysis nonetheless revealed some useful indications for further research. Also, interviews conducted before and after the programme resulted in positive appraisals of the programme as a worthwhile and meaningful activity for ageing people with intellectual disability.     

Older people and falls: health status,quality of life,lifestyle, care networks,prevention and views on service use following a recent fall

Aim and objective. This study has investigated older people’s experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use. Background. Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative. Design. An exploratory, qualitative design involving two time points. Method. A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes. Results. The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non‐injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life. Conclusions. Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities. Relevance to practice. Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen.     

Women’s experiences of important others in a pregnancy dominated by intimate partner violence

Background: Being exposed to intimate partner violence (IPV) during pregnancy is a difficult and complex situation. Despite this, there are few studies describing women’s own needs for help and support. Aim: The aim of this study is to gain a deeper understanding of women’s experiences of important others in relation to changing their life situation in a pregnancy dominated by IPV. Methods: The study has a qualitative phenomenological design. The data were collected through in‐depth interviews with seven Norwegian women, who were exposed to IPV during pregnancy. Findings: Being pregnant and exposed to violence in relation to important others means confronting present life, life history and future life. The essence implies striving for control in an uncontrolled situation, where other people might be experienced as both a rescuer and a risk. This is further described in four constitutions: the child needs protection; my mother is always present for me; an exhausted run for help; and a reduced, but important social network. Conclusions and implications for practice: For women exposed to violence, pregnancy can offer an opportunity for change. Midwives play a unique role in relation to care and continuity in this phase of life, as they can support pregnant women, help to identify their needs, possibilities for action and advise them about appropriate services. Midwives can encourage and support women to find people whom they can trust and who can offer assistance. It is vital that midwives ask about the women’s relationship to the baby and their social networks, especially the relationship with their mothers. Ethical considerations: During the whole study process, guidelines for research on violence against women were followed, to respect the integrity, security and confidentiality of the participants. The study is ethically approved.     

Teaching spiritual care – a grounded theory study among undergraduate nursing educators

Aims and objectives. To explore teachers’ understanding of spirituality and how they prepare undergraduate nursing students to recognise spiritual cues and learn to assess and provide spiritual care. Background. Nursing education addresses patient care in all domains of the person. Systematic teaching and supervision of students to prepare them to assist patients spiritually is an important part of holistic care. However, few role models for spiritual care are seen in clinical practice, and limited research addresses necessary student competencies or how teachers can best facilitate this process. Design. Grounded theory was used to identify teachers’ main concern and develop a substantive grounded theory. Methods. Data collected during semi‐structured interviews at three Norwegian University Colleges in five focus groups with 19 undergraduate nursing teachers were conducted from 2008 to 2009. Data were analysed through constant comparison of transcribed interviews until categories emerged and were saturated. Results. The participants’ main concern was ‘How to help students recognize cues and ways of providing spiritual care’. Participants resolved this by ‘Journeying with Students through their Maturation’. This basic social process has three iterative phases that develop throughout the nursing programme: ‘Raising Student awareness to Recognize the Essence of Spirituality’, ‘Assisting Students to Overcome Personal Barriers’, and ‘Mentoring Students’ Competency in Spiritual Care’. Conclusion. Nursing education should prepare students to recognise and act on spiritual cues. Making spiritual assessment and interventions more visible and explicit throughout nursing programmes, in both classroom and clinical settings, will facilitate student maturation as they learn to integrate theoretical thinking into clinical practice. Relevance to clinical practice. Nursing students need role models who demonstrate spiritual care in the fast‐paced hospital environment as well as in other clinical practice settings. To model spirituality as part of nursing care can assist students to overcome their vulnerability and to safeguard ethical issues and promote patient integrity.     

‘Shadowing’ as a management strategy for chemotherapy outpatient primary support persons

Despite growing numbers of patients with cancer receiving chemotherapy in outpatient settings and the corresponding increase in care demands on family and close friends, little is known about the experiences of those informal carers supporting people with cancer during their chemotherapy trajectories. Using an interpretivist theoretical framework, this study explored the experiences of primary support persons of chemotherapy outpatients through in‐depth interviews with 17 participants nominated as their primary support persons by people receiving chemotherapy at a large tertiary hospital in Australia. The study demonstrates that primary support persons of chemotherapy outpatients face distinct challenges, being at the frontline of treatment and managing side effects with minimal support at home. This role involves sensitive provision of complex medical and social care in circumstances that profoundly challenge the everyday worlds of both patient and carer. From the moment of diagnosis, informal carers in this context face the ‘double whammy’ of needing to ‘manage’ the cancer diagnosis experience as well as the chemotherapy trajectory experience. This study points to the significant level of responsibility that primary support persons take on, and the extent to which patients and clinicians rely on their support and management skills. It also points, however, to the lack of recognition they receive for assuming this role, and their sense of frustration in the face of this invisibility. The conceptualisation of the informal carer role as a ‘shadowing’ role explicitly represents the protective, vigilant, but almost invisible, support role described by the participants in this study.     

‘From stun to gradual balance’– women’s experiences of living with gestational diabetes mellitus

Scand J Caring Sci; 2010; 24; 454–462
‘From stun to gradual balance’– women’s experiences of living with gestational diabetes mellitus Background and aim: In most parts of the western world, screening routines for gestational diabetes mellitus (GDM) are implemented, however, knowledge of the impact GDM has on the experience of pregnancy and life situation is sparse. The aim of this study was to describe pregnant women’s experiences of acquiring and living with GDM during pregnancy. Method: A Grounded Theory approach was used. Ten pregnant women diagnosed with GDM in current pregnancy were interviewed. Data collection was performed in the north of Sweden over two periods; a first set of interviews in 1998–2000 and additional interviews in 2006 to further explore the experience and reach saturation. Findings: ‘From stun to gradual balance’ emerged as the core category, encompassing of the categories ‘Struck by lightning’, ‘Having a personal responsibility’, ‘Being under surveillance’, ‘Struggling for protection’, ‘Feeling socially apart’, ‘Being sufficiently supported’, ‘Changing the self‐image’, ‘Adapting to a new situation’ and ‘Waiting for the ‘Moment of truth’’. Our findings indicated that the diagnosis of GDM initiated a number of challenges and demands for the pregnant women. Further, being diagnosed with GDM was not only perceived as a medical complication threatening the pregnancy, moreover as an indicator of a future diabetes mellitus. Conclusion: The experience of being diagnosed with and living with GDM during pregnancy may be understood as a process ‘from stun to gradual balance’. The experience comprises positive and negative dimensions. Despite the challenges, the inconveniences and the changes involved, gradually adapting to a lifestyle and balancing the every day life is the prize most of these women are willing to pay in order to secure optimal maternal and foetal health. Knowledge of the experiences of women diagnosed with GDM may enable midwives to provide increased support as well as provide information and preventive measures in order to delay future diabetes mellitus.     

Reconnecting with oneself while struggling between life and death: The phenomenon of recovery as experienced by persons at risk of suicide

The body of knowledge regarding health and recovery as experienced by patients at risk of suicide is limited. More research is needed into the meaning of recovery and what strengthens the desire to live. The aim of this study was to describe the phenomenon of recovery in a context of nursing care as experienced by persons at risk of suicide. In line with a reflective lifeworld research approach, 14 patients from a psychiatric clinic in Sweden participated in phenomenon‐oriented interviews. Data were analyzed to describe the essence of the phenomenon. The results reveal that the phenomenon of recovery means ‘reconnecting with oneself while struggling between life and death’. Three meaning constituents emerged: being in an expressive space and giving voice to oneself, regaining dignity through nurturing connectedness, and finding a balance in the tension between life and death. In conclusion, the meaning of recovery is to experience the ability to manage one's own life. Professional caregivers need to acknowledge patients' lifeworlds, in a way that enable patients to experience themselves as capable of managing their own lives. Professional caregivers should also facilitate the involvement of supportive relatives.     

Becoming a caregiver: new family carers' experience during the transition from hospital to home

Aims and objectives. To explore and understand the experience of new informal caregivers in Italy during the transition from hospital to home. Background. Frequent patient discharge into the home environment has lead to a significant increase in postdischarge care being provided by family caregivers. The transition period in particular is seen as a period of great significance, as caregivers may be unprepared and concerned as to the amount of care required by the recipient. Design. A qualitative phenomenological approach was used to gain a deeper understanding of caregivers’ lived experiences. Methods. Data were collected at two points in time using different methodologies: in‐depth interviews were conducted to explore the caregivers’ perspective of the predischarge period; focus groups obtained data after the patients’ re‐entry into the home environment and aimed to validate interview findings. Results. Family caregivers reflected on three main themes during the transition period: (1) their newly acquired role; (2) the recipient’s condition; and (3) the support they required. The core concept of ‘being responsible for everything’ seemed to be a recurring theme running through these three subject matters. Fulfilling numerous commitments and different social roles besides the caring activity itself seemed to weigh heavily on caregivers. Carers were referring particularly to their need for hope, confidence and safety during the transition from hospital to home. Conclusions. It cannot be assumed a priori that families can cope with the demands of care‐giving. Therefore, healthcare professionals should come to recognise caregivers as persons in need of emotional and practical support. Relevance to clinical practice. The findings of this study can stimulate healthcare professionals to acquire effective communication skills and display an empathic attitude when assessing caregivers’ needs in the particularly challenging phase of transition from hospital to home.