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Throughout the developed world, family members are providing skilled and dedicated assistance to disabled people with high levels of disability. Nurses, too, proffer support at home that involves detailed technical procedures, high levels of monitoring and rapid decision-making about interventions. This paper by Wilde Larsson raises a number of perceptive observations about the ‘triad’ of relationships that may exist between disabled person, family member and a professional. As Fortinsky (2001) has observed, it is helpful to think about the interaction between members of the triad, and in doing so to reflect on their different perspectives, roles and priorities.

The participants in this research are also an interesting group, about whom we will hear more if demographic predictions prove correct (see Milne et al., 2001). In this research, most family members were spouses, a relationship between disabled person and carer that is increasingly common. Much early work on informal care was dominated by the ‘spinster’ model, in which unmarried daughters stayed at home to provide care for their parents. This model influenced financial provision as well as ideas that carers might need ‘breaks’ or ‘respite’, and that they might need help after caring to re-enter the labour market or social circles. As Wilde Larsson et al. suggest, spouses are central now and may be husbands or wives.

The situation of spouse carers raises a number of questions for nurses and their multi-disciplinary colleagues. First, there is the question of extent of inter-dependency as both spouses may be experiencing burdens of disease and disability. Secondly, there is the practical question of how to support spouses in crisis, when one is unwell or hospitalized. How can we provide support to the other at home without resort to the ‘solution’ of separation through hospital or residential care? Lastly, to raise an issue that Wilde Larsson et al. do not explore, how can practitioners intervene effectively and sensitively in situations where care is not appropriate, not positive, or even abusive?

In this paper Wilde Larsson et al. questions whether patients’ views on quality of advanced home care are congruent with those of close family members. To investigate his research question he collected information on the opinion of the quality of formal care in a consecutive sample of advanced home care receivers attending a hospital unit in Sweden and their family members. The information was collected through questionnaires to both patients and their relatives. The sample comprised 67 patients and 82 family members, with 54 matched patients and family member pairs. Spouse carers and other co-resident carers showed high levels of congruence with the views of the disabled people who participated in this research. Wilde Larsson et al. compared the views of the two groups in terms of person-related quality of care: medical–technical competence and identity-oriented approach. They did not attempt to measure the physical–technical conditions and the socio-cultural atmosphere dimensions, which were concerned with quality of care in the care organization. That exclusion was quite rational as this study focuses more on views regarding the quality of home-based care, which may be more related to staff than the care organization. Wilde Larsson et al. used the Friedman two-way analysis of variance by ranks, and the Wilcoxon matched-pairs signed-rank test to test the differences between the matched patient-family member pairs. These statistics allow for the high possibility that data collected from the two groups are likely to be dependent, even if they were collected in an independent manner, due to the long-term relation between the patient and family member.

However, we need to examine these results more carefully. Although Wilde Larsson et al. note that patients and family members responded independently to the questionnaire, it is not clear how this ‘independency’ was achieved. Patients received their questionnaires through the responsible nurse in their homes, and were asked to send back their completed questionnaire in a sealed envelope within 1 week. Since many were likely to be reliant on family members to assist in this process, it would have been helpful for the information from the two groups to be collected as independently as possible. Leaving the questionnaire to be completed and returned by the patient in such a way allows the family member (especially those who see the patient daily) to influence, even indirectly, the views of the patients. Thus, the congruency between the views of the patients and the family members is perhaps expected. The situation might have been different if the views of the patients were collected by a third independent party (interviewers) in the absence of the family member.

Nonetheless, the congruency in the views between patients and co-resident family members is a useful finding for two reasons. First, relatives’ views, in some areas, may be viewed as not representative of the patient. This study shows that while this congruence should not be assumed, there may be much merit in listening to what carers believe the patient is thinking, especially if a patient is unable to communicate. Secondly, the study is useful in showing that carers whose opinions are critical or negative may be experiencing views that should be heard. Their potential to act as monitors and to quality assure services is unique in a relatively private setting, like a person's own home, where practitioners’ work and behaviour are not under detailed scrutiny of managers or colleagues.

However, the position of family members who do not have frequent or daily contact, and are not co-resident, is also important. Wilde Larsson et al.'s study showed that the opinions of family members who did not see patients on a daily basis were significantly different from those who see patients everyday. The diversion of opinion between distant family members and co-resident family members and the patients again may raise the question whether this is due to study design or due to true congruence in the opinions of patient and co-resident caregivers. Caring at a distance (Manthorpe, 2001), is an important element in the support of disabled people and such relatives may be involved in routine support that is crucial, such as dealing with laundry or employing care workers. Their social role, providing contact and raising morale, can be as important as instrumental activities. Furthermore, a certain emotional or physical distance may provide them with perspective that enables them to detect deterioration or poor quality of care and to be more incisive in seeking to resolve issues. We need to listen to the enquiries and observations of such family members who may want explanations as much as changes to systems, and to be assured that activities that seem strange and changing are in their relatives’ best interests.

Thus family members are important people in the caring circle, no matter if co-resident or at a distance. Our own research study that talked in depth to patients and family members where enteral tube feeding was undertaken at home showed the value of supporting family members emotionally, as well as equipping them with the technical skills to manage the process of feeding (Liley & Manthorpe, 2003). It also raised the question of how home routines and family life could maintain their positive aspects when space and timetables were invaded by technical equipment, and medical or nursing regimes. Wilde Larsson et al.'s work may usefully be set in this context of struggling to maintain ordinary life while receiving advanced home care. As they show, physical and emotional closeness may mean caregiver and care recipient see things much the same way, but we should remember that those at some distance may have the benefit of better vision.

References

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  2. References
  • Fortinsky R.H. (2001) Health care triads and dementia care. Aging and Mental Health 5, 535548.
  • Liley A. & Manthorpe J. (2003) The impact of home enteral tube feeding in everyday life: a qualitative study. Health and Social Care in the Community 11, 415422.
  • Manthorpe J. (2001) Caring at a distance: learning and practice issues. Social Work Education 20, 593602.
  • Milne A., Hatzidimitriadou E., Chryssanthopoulou C. & Owen T. (2001) Caring in Later Life: Reviewing the Role of Older Carers. Help the Aged, London.