To Örebro University

Aim and Objectives: To increase the understanding of next of kin’s life situation in the context of supporting persons who are long term ill, disabled and/or older by describing their experienced burden and quality of life and also the relationship between QoL, burden and socioeconomic variables.

Methods: Cross-sectional, descriptive and correlative design. Eighty-four next of kin answered two questionnaires: the Caregiver Burden Scale and the Subjective Quality of Life.

Results: Next of kin experienced a high burden in their life situation although they, at the same time, experienced a good quality of life. In the results gender differences were found. Females next of kin to a higher extent were disappointed, more emotionally involved, and they also estimated their economic situation as more unsatisfactory than the males next of kin.

Conclusion: Healthcare personnel meet next of kin, persons in need of care, within all healthcare and social care in society.Therefore it is important to have a general knowledge and ability to understand the next of kin’s life situation, thus making it possible to focus the nursing interventions on individual support regardless of the care receiver’s diagnosis.

Nursing research has been performed during the last 20-30 years, about the next of kin’s vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin’s relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

In Sweden, national guidelines have been introduced to ensure that older persons in need of health care and social services enjoy a meaningful daily life. When new guidelines are introduced in elderly care, the experience of the older persons or their relatives are seldom taken into account as the guidelines often are formulated from using a top-down approach. Therefore the aim was to describe relatives experience about obstacles and opportunities for a meaningful daily life for their older family member. The analysis was based on a qualitative content analysis. Five themes describe how a meaningful daily life can be created and one overall theme emerged that describe a meaningful daily life as “In partnership to maintain the family member’s routines and habits in an everyday rhythm filled with meaning, in a home like environment and in community with others”.

The experience of their life situation of next of kin in informal caregiving needs to be followed as they may need support to maintain their own health and cope with continuing in their caregiving role. Many of these individuals, often the older person’s spouse, are elderly themselves. The aim of this study was to increase the understanding of the next of kin’s experience of their life situation in connection with their informal caregiving of older persons. The study had a qualitative approach, with an inductive explorative design. Informal conversational interviews were conducted. Twelve next of kin were interviewed, nine of them twice. In all, 21 interviews were performed, and subsequently subjected to latent content analysis. The theme that emerged from the data was “A balance or imbalance in next of kin’s daily life.” The three subthemes were: (1) Balance and imbalance in the relationship with the older person, other family members, and friends; (2) Balance and imbalance in the relationship with the staff from municipal care; and (3) Balance and imbalance in demands, affecting the caregiver’s own health. Communication with mutual respect was described as a tool for creating good relations. The results of this study highlight the strained life experiences of next of kin while caring for older persons. There is a need to give more attention to the next of kin’s life situation and to find the means to support them. To reduce worry and stress, health care staff need to understand the next of kin’s experience of their life situation, and good relations need to be created among all involved in the care.

The aim of the study was to describe the quality of life of the next of kin of patients diagnosed as having multiple sclerosis (MS). Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The next of kin's quality of life emerged as good in terms of both external conditions and interpersonal relationships in both the interviews and the Subjective Quality of Life. In the interviews, most of the next of kin indicated a trusting and secure relationship with the cohabiting partner, but others described a strained situation with an unsatisfactory married/cohabiting life. There was worry about a worsening of the relationship in the future. In addition, the next of kin spoke of a decrease in freedom, self-actualization, and security, also of a more negative general mood and negative emotional experiences. The results of the questionnaire showed that a sense of engagement in life, having energy, self-actualization, self-assuredness, self-acceptance, security, and general mood were significantly correlated with quality of life as a whole. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future. The nurses could start family support groups and help the next of kin to look after their own health, giving advice on health-promoting behavior to make it possible for the person with MS to live at home even if the illness becomes worse.

The well-being of patients' next of kin can be an important factor with regard to the care and rehabilitation of patients with multiple sclerosis (MS). The aim of this qualitative study was to explore the presence and meaning of chronic sorrow in a group of next of kin of patients with MS. Using a semistructured interview guide as a basis, 44 next of kin were interviewed. The results showed that 35 (80%) of the participants were considered to have chronic sorrow based on predetermined criteria. Three main themes characterized the meaning of chronic sorrow: loss of security, loss of sense of community in family life, and loss of joy and recreation. This study indicates that nurses need to devote greater attention to the well-being of next of kin, offering support programs to help them cope with chronic sorrow.