Between hope and hopelessness: COPD patients' and their family members' experiences of interacting with healthcare providers – a qualitative longitudinal study

Background

Patient–family–healthcare provider interaction seems important for patients with chronic obstructive pulmonary disease (COPD ) and their family members' self‐management practices. Because the need for support might be enhanced after a hospitalisation, it might be beneficial to explore this interaction further in follow‐up health care.

Aim

To explore the meaning of patients' and their family members' experiences of interacting with healthcare providers to their daily self‐management over time.

Methods

Participant observations and in‐depth interviews were conducted repeatedly with 10 patients and seven family members during follow‐up visits at hospital and at the participants' homes between 2014 and 2016. A phenomenological–hermeneutical approach was used to interpret the data.

Results

‘Between hope and hopelessness’ involved frustrations, concerns and doubts, all of which could relate to the interaction with healthcare providers. ‘Seeking support from healthcare services’, ‘navigating between healthcare providers’ and ‘collaborating with healthcare providers at home’ could entail opportunities to strengthen self‐management and hope; however, it could also entail reduced faith in getting the right help and hopelessness.

Conclusion

During a period of transition after hospitalisation, available and well‐coordinated healthcare services, and alliances with healthcare professionals are crucial to COPD patients and their family members in terms of their self‐management, hope and well‐being.

     

Need of support in people with chronic obstructive pulmonary disease

Aim and objective

The aim of this study was to describe peoples’ experiences and expectations of support when living with chronic obstructive pulmonary disease.

Method

We conducted and analysed face‐to‐face or telephone interviews with 17 individuals (aged 44–77 years) diagnosed with chronic obstructive pulmonary disease. The interviewer asked open‐ended questions aimed at encouraging further narration, and we analysed the participants’ narratives using a phenomenological hermeneutical approach. This report adheres to the COREQ guidelines.

Results

The overall theme suggests that people with chronic obstructive pulmonary disease describe support as shared knowledge and experiences, based on the following subthemes; similar experiences, the need of genuine professional knowledge, self‐reliance versus self‐blame, and the Internet – feeling safe but uncertain.

Conclusions

People with chronic obstructive pulmonary disease find their strength through shared knowledge and dialogical support with others who have similar experiences and with professionals. A person‐centred eHealth approach may be suitable for this group as it offers both collaboration and support.

Relevance to clinical practice

There is a demand for access to genuine professional knowledge as additional support to patients’ own capabilities and needs. Patient associations were assessed as reliable sources of information and to some extent also support, but the importance of access to professional sources was also stressed.     

Stigma experience of families supporting an adult member with substance misuse

Stigmatization of families supporting an adult member with substance misuse is common and undermines their capacity to support the person and maintain their own well‐being. The aims of the present study were to understand affected family members (AFMs)’ experience of stigma within the context of substance misuse, and to explicate what steps, if any, they took to try to counteract stigma and social isolation. Semistructured, audio‐recorded qualitative interviews were conducted with 31 AFMs from Victoria in Australia. Interpretative phenomenological analysis was used to guide data collection and analysis. Two main themes and related subthemes abstracted from the data illustrated how participants perceived and responded to stigma associated with a family member's substance misuse: ‘engaging in secrecy, and minimizing contact with others’ and ‘lack of knowledge and empathy, and judgmental attitudes reinforcing isolation’. A third theme, ‘adopting measures to moderate the effect of stigma’, highlights how some attempted to respond to stigma by challenging informal supports’ misconceptions about substance misuse, and being open selectively with others about their situation. Stigma against AFMs should be identified and challenged. Mental health nurses and other clinicians in the alcohol and other drugs field are in a strong position to support AFMs, with a particular focus on reducing courtesy stigma, challenging some clinicians’ judgmental attitudes, and improving ways of communicating with families.     

Family involvement in timely detection of changes in health of nursing homes residents: A qualitative exploratory study

Aims and objectives

To explore family perspectives on their involvement in the timely detection of changes in their relatives' health in UK nursing homes.

Background

Increasingly, policy attention is being paid to the need to reduce hospitalisations for conditions that, if detected and treated in time, could be managed in the community. We know that family continue to be involved in the care of their family members once they have moved into a nursing home. Little is known, however, about family involvement in the timely detection of changes in health in nursing home residents.

Design

Qualitative exploratory study with thematic analysis.

Methods

A purposive sampling strategy was applied. Fourteen semi‐structured one‐to‐one interviews with family members of people living in 13 different UK nursing homes. Data were collected from November 2015–March 2016.

Results

Families were involved in the timely detection of changes in health in three key ways: noticing signs of changes in health, informing care staff about what they noticed and educating care staff about their family members' changes in health. Families suggested they could be supported to detect timely changes in health by developing effective working practices with care staff.

Conclusion

Families can provide a special contribution to the process of timely detection in nursing homes. Their involvement needs to be negotiated, better supported, as well as given more legitimacy and structure within the nursing home.

Relevance to clinical practice

Families could provide much needed support to nursing home nurses, care assistants and managers in timely detection of changes in health. This may be achieved through communication about their preferred involvement on a case‐by‐case basis as well as providing appropriate support or services.     

Family‐focused recovery: Perspectives from individuals with a mental illness

Family members often provide significant support and care to their relative who has a mental illness. Nonetheless, how family members might be part of an individual's mental health recovery journey is rarely considered. The aim of this study was to investigate how those with a mental illness define ‘family’ and the role of family (if any) in their recovery journey. A qualitative approach was used. Purposive sampling and snowballing were used to recruit and conduct semi‐structured interviews with 12 people who have been diagnosed with a severe mental illness. Participants defined family in various ways with some being very inclusive and others more selective. There was acknowledgement that family contributed to the individual's recovery in a myriad of ways, although the need for boundaries was stressed. While no participants suggested that their family might become active treatment facilitators, they did want clinicians to support them in talking to their family about their mental illness. A multifaceted approach is needed to promote family‐focused recovery practice. The needs of different family members and the needs of the family as a group should be considered concurrently alongside the individual's needs in their recovery plan. Individual and relational components of recovery should be embedded in policy and clinical practice.     

Health promotion in specialist and community care: how a broadly applicable health promotion intervention influences patient's sense of coherence

Background

Chronic illness health interventions aim to strengthen individuals' wellness resources, in addition to their ability to handle their condition. This presupposes a partnership between patients and professionals and flexibility in care organization.

Aim

This study aims to investigate possible changes in individuals' sense of coherence while living with long‐term illness as they engage in a broadly applicable health promotion intervention developed in specialist care settings that was later implemented in the community care context.

Method

This study had a pre–postdesign. Sense of coherence was measured using the SOC ‐29 questionnaire at baseline and within 14 days of programme completion. The total baseline sample included 108 Norwegian adults (aged 21–89) with chronic illness. Data were analysed using paired samples t ‐tests.

Results

In both clinical sites, the total sample's mean SOC score changed positively from the baseline to the follow‐up 4 months later. This change was larger for the participants in the community care context. Manageability increased significantly for women. Significant positive changes in SOC score and the manageability dimension were also identified among participants who had children. Similar findings were found for those who were living with a partner, as well as for public transfer payment recipients.

Conclusion

The intervention contributed to a positive change in participants' SOC while living with illness. The findings revealed that the intervention is a flexible health promotion tool across age, diagnostic categories and clinical sites. The community participants' SOC changed the most, which indicates that the intervention is especially relevant in the follow‐up of persons living with long‐term illness within the community. The intervention contributes to a shift of perspectives in health care towards strenght‐based care and health within illness.

     

Experience of stigma among family members of people with severe mental illness: A qualitative systematic review

Family members of people with severe mental illness are subjected to stigmatization, and a better understanding of their experience of stigma is important for developing anti‐stigma interventions to reduce the related adverse consequences. This review aimed to systematically identify, evaluate, and synthesize existing findings from qualitative studies regarding the experience of stigma among family members of people with severe mental illness. A systematic literature search for primary studies was conducted in PubMed, EMBASE, Ovid MEDLINE, Web of Science, PsycINFO, CINAHL, ProQuest Dissertations and Theses (PQDT), SinoMed (China), Chinese Citation Database (CNKI), and Wanfang Data (China) until March 2019. Findings from the included qualitative studies were extracted and aggregated using meta‐synthesis, guided by the Joanna Briggs Methodology for Qualitative Systematic Reviews. The results revealed that family members experienced stigma and suffered from various negative consequences related to it. Five major categories were identified in 20 studies: ‘negative public images of mental illness’, ‘structural discrimination against mental illness’, ‘stigma encountered in everyday life’, ‘psychological distress associated with stigmatization’, and ‘coping with stigma’. The study contributes to our understanding of the stigma experienced by family members of people with severe mental illness. It is suggested that culturally appropriate multi‐level interventions targeting the general public, health professionals, communities, and family members need to be developed to reduce the harmful influence of associated family stigma.     

Conserving the vitality of suffering: addressing family constraints to illness conversations

When persons are confronted with life-threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and family suffering following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses.     

Family members’ participation in palliative inpatient care: An integrative review

Aim

To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported.

Methods

This review followed a methodology outlined in the literature for integrative reviews. A literature search supplemented by a manual search was conducted on four electronic databases during 2020 to 2021: PubMed, CINAHL, PsycINFO, and Cochrane Library. A critical appraisal of the included studies was performed, and data were analysed using inductive content analysis.

Results

The literature search resulted in 4990 articles, of which 14 articles were included in this review. Four main categories were identified concerning the participation of family members in hospital inpatient palliative care: participation in the physical care, provision of emotional support, promoting good patient care, and support provided by healthcare professionals for family members’ participation. Family members’ participation can be supported in different ways, including active communication and adequate information.

Conclusion

Family members’ participation in hospital inpatient palliative care has been an important part of palliative care in hospital settings. Family members should be offered the opportunity to participate in patient care, and their presence in the hospital should be accommodated. Research on the topic is still scarce, and future research is needed from different perspectives, including intervention research.     

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives

To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness.

Background

Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness.

Design

An exploratory qualitative study.

Methods

Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved.

Results

Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources.

Conclusion

Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles.

Relevance to clinical practice

It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.

     

Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world

Title. Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world. Aim. This paper is a report of a study to explore the changes experienced by the person living in a body with chronic obstructive pulmonary disease. Background. Chronic obstructive pulmonary disease is the world’s fourth leading cause of death, and the World Health Organisation predicts further increases in prevalence and mortality. Despite a growing body of associated knowledge, there remains much to learn about patient and family‐driven goals for medical and surgical treatment to guide nursing practice, to support self–management strategies, and to provide a context for therapeutic outcomes. Methods. Merleau‐Ponty’s philosophy of the body provided a framework for this Heideggerian phenomenological inquiry with 15 people with emphysema and 14 of their family members. The participants were drawn from three Australian teaching hospitals. Hermeneutic analysis was used to interpret 58 in‐depth interviews conducted between 2003 and 2005. Findings. People with severe emphysema experience a shrinking life‐world shaped by breathlessness. This diminishes the predictability and automatic nature of their bodies and their perceived effectiveness as a person. They develop a number of strategies of conscious body management to facilitate breathing, mobility and task completion. Conclusion. Understanding of the person’s changed body and the resulting expertise that those living with chronic illness bring into care and assessing and facilitating this expertise are central to planning sensitive and appropriate care and evaluating outcomes for medical or surgical therapies that are perceived as meaningful to the person.     

The meaning and validation of social support networks for close family of persons with advanced cancer

Background

To strengthen the mental well-being of close family of persons newly diagnosed as having cancer, it is necessary to acquire a greater understanding of their experiences of social support networks, so as to better assess what resources are available to them from such networks and what professional measures are required. The main aim of the present study was to explore the meaning of these networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study??s empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing.

Methods

Seventeen family members with a relative who 8?C14?weeks earlier had been diagnosed as having lung or gastrointestinal cancer were interviewed. The data were subjected to qualitative latent content analysis and validated by means of identifying antecedents and critical attributes.

Results

The meaning or main attribute of the social support network was expressed by the theme Confirmation through togetherness, based on six subthemes covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Three subthemes were identified as the antecedents to social support: Need of support, Desire for a deeper relationship with relatives, Network to turn to. Social support involves reciprocal exchange of verbal and non-verbal information provided mainly by lay persons.

Conclusions

The study provides knowledge of the antecedents and attributes of social support networks, particularly from the perspective of close family of adult persons with advanced lung or gastrointestinal cancer. There is a need for measurement instruments that could encourage nurses and other health-care professionals to focus on family members?? personal networks as a way to strengthen their mental health. There is also a need for further clarification of the meaning of social support versus caring during the whole illness trajectory of cancer from the family members?? perspective.     

Predictors of recognition and practice of family nursing among healthcare professionals in Japan

Abstract Background. Although many nurses have become aware of the importance of family‐centered nursing, very little is known about the advanced knowledge and intervention skills of family nursing in Japan. Objectives. We examined the characteristics of their recognition of family nursing and factors related to the practice of family nursing. Methods. The subjects were nursing staff at a large hospital in Fukuoka, Japan (n = 596). A study using self‐administered questionnaires was conducted in October 2002. Factor analysis and multiple linear regression analysis were used to analyse the data. Results. Of 596 nurses, 376 returned questionnaires (63·6%). The study achieved the following findings. (1) The nurse's recognition of family nursing had four subscales: skills required to interview family members to construct a trusted relationship; assessment of family structure and family functioning; interventional skills of family nursing; and skills to collect information on family members. (2) The predictors of family nursing recognition were ‘gender’, ‘job position in hospital’, ‘individual experience of caring for their family members’, ‘length of clinical experience’ and ‘types of wards where they work’. (3) The predictors of practice of family nursing were ‘interventional skills of family nursing’, ‘skills to collect information on family members’ and the ‘total of four skills’. Conclusions. It is implied that the acquisition of knowledge and skills of family nursing in hospital settings are invaluable to consciousness‐raising and practice of family nursing. Relevance to clinical practice. As the factors related to practice or recognition of family nursing have been identified, the present findings are useful for hospital administrators who want to promote family nursing in their hospitals.     

Affected family member coping with a relative with alcohol and/or other drug misuse: A cross‐sectional survey questionnaire

Families have a crucial role supporting a relative with alcohol and/or other drug misuse, but the role has adverse implications for family members’ coping, which in turn, affects their ability and willingness to support the relative. The aim of this study was to assess the coping behaviours of affected family members of relatives with alcohol and/or other drug misuse and to assess if there was a relationship between the level of coping and family member type and support‐giving experience. A cross‐sectional survey design was used, and 90 respondents completed the questionnaire. Results suggest the following associations: that ‘Other’ family members made more frequent use of maladaptive coping strategies than intimate partners (P = 0.012); family members whose role had a negative effect on their physical health made more frequent use of maladaptive coping strategies than those whose role did not have this effect (P = 0.014); and family members whose role had a negative effect on their ability to socialise used maladaptive coping strategies more often than those whose role did not have this effect (P = 0.003). Engaged and tolerant‐inactive maladaptive coping strategies had a significantly greater adverse influence on family members’ physical health and/or socialising than withdrawal coping strategies. Affected family members should be supported to use adaptive coping strategies to mitigate the detrimental effects of their support‐giving role and to sustain them in this crucial support‐giving role. Family and friends, mental health nurses, and other clinicians in the alcohol and other drug field have an important role in supporting family members in this context.     

Defining competency-based evaluation objectives in family medicine: Communication skills

Objective

To provide a pragmatic approach to the evaluation of communication skills using observable behaviours, as part of a multiyear project to develop competency-based evaluation objectives for Certification in family medicine.

Design

A nominal group technique was used to develop themes and subthemes and to identify positive and negative observable behaviours that demonstrate competence in communication in family medicine.

Setting

The College of Family Physicians of Canada in Mississauga, Ont.

Participants

An expert group of 7 family physicians and 1 educational consultant, all of whom had experience in assessing competence in family medicine. Group members represented the Canadian context with respect to region, sex, language, community type, and experience.

Methods

The group used the nominal group technique to derive a list of observable behaviours that would constitute a detailed operational definition of competence in communication skills; multiple iterations were used until saturation was achieved. The group met several times a year, and membership remained unchanged during the 4 years in which the work was conducted. The iterative process was undertaken twice—once for communication with patients and once for communication with colleagues.

Main findings

Five themes, 5 subthemes, and 106 positive and negative observable behaviours were generated. The subtheme of charting skills was defined using a key-features analysis.

Conclusion

Communication skills were defined in terms of themes and observable behaviours. These definitions were intended to help assess family physicians’ competence at the start of independent practice.     

Implementing child-focused family nursing into routine adult psychiatric practice: hindering factors evaluated by nurses

Aims and objectives. The aim of this study is to describe nurses’ evaluations of factors that are hindering implementation of child‐focused family nursing (CF‐FN) into adult psychiatric practice. In addition, it explains the nurses’ evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family. Background. There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long‐term benefits from preventive family interventions, implementation of CF‐FN is not routine mental health practice. Design and methods. Data were collected via a questionnaire‐survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%. Results. Family‐related factors, such as families’ fears and lack of time, were considered as ‘most hindering’ to CF‐FN. Nurses who used a family‐centred approach and had further family education considered most of the factors as ‘less hindering’ in comparison to other nurses. Conclusion. To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF‐FN. There is a need for further education and use of family‐centred care to develop this preventive approach. Relevance to clinical practice. The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.     

Personalized pain assessment: What does ‘acceptable pain’ mean to you?

Background

What ‘acceptable pain’ means may be different for everyone and dependent on the moment and the context. In this text, we explore the concepts of pain acceptability and acceptance. We explain why we need to better explore (un)acceptable pain, to eventually facilitate pain assessment and management.

Methods

Using different approaches and perspectives (with examples and application from multiple disciplines, i.e. orthopaedics, psychology, pharmacological therapy), we discussed anecdotal examples and included a systematic, scoping and literature review.

Results

We rejected the idea that in the context of chronic pain, acceptability, disability and manageability overlap neatly. Additionally, we rejected the validity of pain intensity rating scales to sufficiently explore individuals' experience of pain. In the one study that met our criteria, a definition of ‘acceptable pain’ was dropped as participants deemed it inappropriate because it did not address the significant challenges associated with pain. This is important, however, because the acceptability of pain may precede, follow and/or inform the ‘pain acceptance’ process, which is an important concept associated with better outcomes.

Conclusions

Very little is known regarding what ‘acceptable pain’ may mean to people living with pain. Qualitative studies may improve our understanding of individuals' perceptions, perspectives and expectations as we do not know, for the moment, what ‘acceptable pain’ may mean to a particular person and, potentially, regarding a specific treatment or other contextual aspects that are not captured with currently used scores and quantitative measures.

Significance

What does ‘acceptable pain’ mean may differ between people with painful experiences and may depend on contextual factors. Pain acceptability may be distinct from manageability, and may precede, follow and/or inform the ‘pain acceptance’ process. This text, rigorously based on a review of the existing literature, defends the idea that acceptable pain should be better studied.